Worry. Concern, Fear, Nervousness, Uneasiness, ANXIETY. I've been trying my hardest to fight off anxiety the last few days. I actually have nothing to be worried about right now yet my brain is unfathomably always capable of producing something to be concerned about... it is inexplicably 100% reliable when looking for something as a cause for concern.
I was perusing my Facebook feed this morning, as I do too often, and a friend had posted this:
Of course, I "liked" the post and immediately realized that she had unknowingly posted it specifically for me. This was the work of God, I'm sure. I read it several times over in hopes that it would stick with me throughout the day. I analyzed it, or rather overanalyzed it... to the point where I realized that the words "him" and "he" should have been capitalized. Then I internally slapped myself in the face and snapped out of the criticism mode and back into the message. As I drove to work today, I prayed. I prayed about all the things I was thinking and worrying about so far today which early in the day was already a list that kept me busy praying for the ride to work- an hour and fifteen minutes long.
...And I felt peace.
As I go about my day at work, a couple women stopped in with information on Relay for Life. We shared information and they went on with their day. I, on the other hand, started thinking more about cancer, and everything I've been through. It wasn't in a depressive, anxious way as much as it was in a "what do I do with this to make it good?" way. I then recalled the anxiety I have been fighting off the last few days and really started thinking about the possibility of it never really going away. If it never does fully go away, I better learn to live with it... I've been with it for 8.5 years now, so come on, I should know anxiety in and out pretty well by now yet it always surprises me and often gets the better of me. It is what it is right now for whatever reason and I need to just move forward through each day as it comes.
If you've read my previous posts, you'll have read one about after-cancer care regarding the growing developments and awareness for "survivorship." I read another article on that today: 'Cancer Survivor" Taking on New Meaning for Patients I've been, for the most part, enjoying new information on this subject lately even though they often come with new concerns for this worrywart.
I suppose my message for the day would be to take each day as it comes and release yourself of the burden of too many concerning issues. Focus on the positive aspects of anything negative that comes your way and smile today because after all, today is a blessing that we will not have tomorrow. Enjoy life.
I have to first apologize for not blogging every single day. It's not easy for me to re-live the worst parts of my life on a daily basis and quite honestly, I procrastinate. If there is anyone out there that may look to this blog for hope or distraction or anything positive, I know I have let you down and I am sorry. Someone stepped into my art studio the other day... quite a few people do on a daily basis, and a good plenty of these people are looking for donations of some sort. I have a policy at the studio to only donate to cancer causes and visual arts, to narrow it down because we get so many requests. So, when a cancer cause is brought to me, I often end up talking about my story and my blog site. Anyway, this particular person made one simple little comment to me that made me realize how important blogging on a daily basis really is... it's for that one person that may look to my words for hope... even if it's just a tiny short little paragraph, I must post daily. I agree and my heart sunk deep and I instantly felt like a complete let-down. One of the two BIG THINGS I'm doing in my life that could resonate with someone deeply and I am failing. And for that, I AM TRULY SORRY. I promise to make a better effort to post every day. *Notice I gave myself the "out" stating that I'll make a better effort rather than actually just promising to post daily. Why would I do that?! I'll tell you why... because in all reality, when I log in to this blog site, I am forced to think about cancer. It's as simple as that.
Now on with the medical history; my last post ended with me headed into my first surgery after the resident doctor so bluntly gave my life a sentence of "6 months at best."
I'm not sure exactly at what point it happened, but I have now literally entered a state of shock. My recollection of my experiences for the next 6 months is spotty at best.
I woke up from surgery in a bed surrounded by a team of smiling doctors. Thank God for IV drugs because I absolutely needed it. I felt ok post-op, but it isn’t good when you wake up from surgery staring at a TEAM of doctors staring back at you. But we already knew this was likely, so what now? It can’t be worse, can it?
It can ALWAYS be worse. Remember that so that you make yourself feel better… it really CAN always be worse.
So, they were right. I had kidney cancer. Stage IV. There’s no stage V… stage V is death. I’m almost there. And, here I thought I was healthy for the most part with just something a little off that I was taking care of and monitoring (in my state of denial, or rather HOPE that I was the lucky one who really didn’t have a larger issue, or if I did, it wasn’t too large, just a nuisance). Stage IV… because it metastasized from my kidney to my bone through the bloodstream. There’s a lyric in a song about cancer so bad that it is in the bone… because I knew the song, I automatically connected this scenario as the worst possible place it could go. This lyric made me believe that this was the last stage of cancer and once it’s in the bone, that’s it. Game over.
It’s amazing how our surroundings can affect our well-being and frame of mind.
Sounds like the worse case scenario; but remember, it really could have been worse. It could have gone to my brain, or spine, or liver or any other vital organ. So, ok… I caught a break (pun intended). I think these thoughts as the nurse feeds me red jello and as the doctors introduce themselves as if I may one day remember any of them. Back off people… I’m drugged, I’m in shock, and I’m going to die… and I just found out. I just want to eat this tasty, sweet, red, smooth jello right now while linked up to this wonderful bag of drugs.
It almost felt like I was Dorothy looking at the Tin Man, the Lion and the Scarecrow. Each of them had their own thing to say. One doctor was very kind. I remember him saying, “I’m here to give you hope.” I also remember focusing on just trying to focus on him and make sure the jello went into my mouth. Hope? There’s hope. Where is it? He tells me I have options and I’ll be seeing him soon, but first I must recover from this biopsy and get through another surgery. Another surgery? Another doctor steps in and tells me that I have to give him my kidney. They can take it out tomorrow or wait until I heal from the surgery I am still waking up from my first surgery. A reminder… I’m on an IV drip of some very good drugs at this point. So… I rationalize the way a drugged person would: It’s late January and the Superbowl is coming up soon. It was pushed back to February this year. I’m currently in first place in my confidence pool and was hoping to have a Superbowl party this year. So, I find it perfectly acceptable, while on these amazing drugs, to ask “If you take it out tomorrow, will I be home in time to have my Superbowl party? I’m going to win my Superbowl pool this year and I want to watch the game.” I remember this line because I was so surprised to see and hear everyone laugh at me as if I had said something funny. “I’m not being funny.” I said. One doctor looked at me and tilted his head and responded, “yes, if all goes according to plan, you’ll be home. But, you’ll be resting and recovering.” So I said “ok… take it tomorrow because I don’t want to come back again.” Settles that. I think everyone should be given good drugs when making serious decisions. It really truly helped me. I'm not so sure I wouldn't have just broken down into a fit of tears fueled by fear, like I do NOW when I go for routine scans and hear that I have to have a procedure done.
Shortly after, I remember needing to urinate. They had to get staff to help me to the restroom. On the way back from the restroom, which wasn’t far from my bed, I felt very ill and asked for a pan. They brought a chair. I asked for a pan again… they gave me, ironically, a pink kidney shaped pan slightly larger than the size of my hand. What the hell is that?! Before I could even ask for a BUCKET, I threw up in the pan only to have it all splash right out of that tiny, insulting pan back into my face and down the front of me. My mom started worrying because it was red… she called the nurses all over immediately thinking it was blood coming out. Meanwhile… I’m still drugged and remember telling her that it was ok because it tasted like cherries. Best puke ever! Bonus! Here I was just enjoying the taste of my own puke while my mom was in immediate panic and It was just the jello coming back out, not blood. See? There is always something good in bad experiences.
They took my kidney out. I don’t remember how that went. I do remember something that I don’t discuss often though and it’s something I have no explanation for. I remember during the surgery seeing a light, then closing my eyes and seeing a brighter light. I opened and closed my eyes peacefully quite a few times trying to figure out what was going on, but never did. After surgery, in the hospital, the staff came into my room very early one morning when none of my family was around with a questionnaire for me to fill out and sign. My family was not there and I was still heavily drugged. I don’t remember all the questions, but I do remember them asking me if I remember anything during the surgery. I did explain to them the light experience, but that’s all. I don’t know if something happened that they didn’t tell us about or if it was standard procedure. I didn’t care. I was still in shock and now in recovery after my second surgery… before another series of surgeries to the hip/leg to come.
In retrospect… I do believe that something happened during that surgery. It was the first time I felt that “peace” feeling during a very confusing “light” experience. I cannot explain this one.
My family took me home. I don’t remember when my dad came out, but he was there. I had family visiting me a few at a time, brothers, aunts and uncles, cousins, friends… I remember only bits and pieces. I remember getting a whole living room full of flowers and thinking how well loved I was that so many people sent me something, little symbols of their love and care. And then I spiraled into the artist way of thinking… how symbolic of life that they would send flowers that DIE shortly after being sent. And I grew to resent them as much as I adored their beauty, scents and symbolism. I received a few checks to help with finances; if you don't know, cancer is VERY expensive, MONUMENTALLY expensive... if you don't have a pile of money sitting around somewhere, I highly recommend not getting it. One person sent me a gorgeous antique cross and a group of church friends made a prayer shawl for me. These two items I most adored and still do today. My parents went out and purchased a recliner for me to recover in since I was not able to lay flat in a bed. They removed my left kidney laparoscopically, thankfully, given the archaic alternative of cutting the torso almost in half to remove it! OMG, I was blessed there! Another domino saved for the moment!
I remember Sally (my dog-ter: dog-daughter) knew not to jump up onto my lap. She would sleep in bed and then in the morning would rub up against my chair to wake me and pet her to let me know she was there supporting me. I honestly believe she knew I was sick and she knew I needed her. She would lay by my chair or at my feet, but would never climb up onto me, which was unusual because she was a great hugger! So smart. I really miss her.
I remember my parents also buying a small table to work on… we didn’t have a dining table or kitchen table. We always just ate in the living room or on the back patio. So, they bought us a table… we needed it with all the guests and for them to do research. I was still recovering as they were navigating treatment options, research and medical bills. I was so blessed to not have to deal with that through this whole ordeal.
I also remember one friend who sat by my side as I had to use the toilet- for my comfort in her discomfort- I vaguely remember this, but I remember her willingness to be there for me and help me in any way I needed. Thank you, publicly unnamed friend (you know who you are)... I know that was probably the worst job to have.
I remember another friend who flew down to help while she was pregnant… to be with me… laundry, dishes, cooking… whatever. Just to be there for me. Thank you, publicly unnamed friend (you know how you are)... I know what a challenge you must have gone through leaving your family at home to help me.
I remember my mom and my brother cooking meals and doing all my chores… making me smoothies with my supplements in them so I could build my immune system back up. I can't even thank my family enough! The Hell that they've all been through with me and around me I'm sure was at a faster pace and I'm surprised they don't all have anxiety from it all.
I remember celebrating my mom’s birthday at a restaurant on the beach the day before my next surgery- the big hip surgery. I’m glad we got to celebrate HER before I went in for that next series of nightmares.
I remember being on crutches from the time we found out about the crack in the bone to... well... for a very long time after the hip/leg prosthetic was installed. My robot, superhero parts. We'll get to that in another post. For today, just remember to count your blessings, breathe in hope and happiness, and remember to be grateful because it really can actually be much worse.
Recently, I've noticed more and more new articles popping up on the subject of "care after cancer." I'm intrigued by these for obvious reasons and I'm awakened about the possibility that I'm not the only one with problems relating to survivorship (I really do not like that term). I often feel as though I should just be so thoroughly relieved and happy but then I question why I am not and am instead in a constant state of worry. I am completely cognizant of the fact that the after-cancer "issues" affecting me are likely not near the physical ones that most other survivors are dealing with since I never went through chemo nor radiation. My physical pains are all from surgeries alone. Because of this, I tend to devalue myself along with my worries and concerns and I often feel insignificant and over-dramatic. Yet, I have very little control over these issues that plague my mind... and I address them daily. I am so very aware of how I am portraying myself to others when I'm fighting through anxiety and it's not a pretty sight. I feel pathetic, and not myself. Mostly, I feel out of control. Anxiety and panic didn't show up in my life until about eight months after the cancer diagnosis. I don't know about any of you, but to me this poses a little more of a problem because I wasn't used to having them and I've lived life experiencing it without them which makes me crave going back to that as I hang on to those feelings of "normalcy." It amplifies the frustration of having to deal with anxiety.
Here's the article I read today...
"Who Should Lead the Shared-Care Cancer Survivorship Model?"
I suppose I am very fortunate in this particular subject. I have an oncologist who remains overseeing my care- every six months or more depending on what shows up in the scans. I actually don't have a primary care physician, which I know I should get, but in all honesty, the only time I ever go is when I need an antibiotic because everything else is overseen by my oncologist or other specialty doctors. If I have a symptom of anything, I just go to urgent care... Now that I type this for the entire world to read, I am definitely thinking that I should get a PCP. However, I would rather have a Naturopathic Doctor. In California, Naturopaths are legally able to be a PCP... I used to live there and LOVED mine, but then I moved back to the Midwest where it's like going back in time and most people don't even know what a Naturopathic Doctor is. So I guess that's my current excuse for not having a PCP. I'll get on that. Meanwhile, having been through a physical and mental state of shock and a legitimate traumatic experience, I've been diagnosed with PTSD by one doctor and have HORRIBLE panic attacks that may or may not eventually go away. I'm working on that. That's my biggest problem is having to deal with anxiety and all the memories that cause it. The little things are the physical things... I'm down a kidney (no noticeable difference, thankfully), I have physical scars all over my body (which really don't bother me as long as I don't touch them and freak myself out) and then there's the consistent pain in my hip where the titanium "mega-prosthetic" hip replacement sits. Sometimes that pain is just a little annoying while other days it keeps me from standing up. So, I guess I have some issues trying to "be normal" and live life as "normally" as possible considering it's NOT NORMAL and never will be. And it's OK, it really is... it's just hard, to put it simply. It's not easy living after cancer, but I think we would all agree that we will take the difficulties over the alternative.
Regarding the above article, I hope that the trend goes towards Oncologists taking on the lead role in care after cancer. As a survivor myself, I much prefer someone SKILLED and TRAINED watching over me and my every little spot or symptom which only THEY would know is a potential issue or not rather than a PCP who is only going off of the general norm. They're also much more versed in the effects of having gone through cancer and in my opinion know a lot more about life after cancer than a PCP would considering their experiences... even when considering mental vs physical.
There was one article I read months ago which I am unable to find again today. It really resonated with me. It was about how life after cancer can often be the most difficult part of cancer. It really made sense to me because it explained that while we are in fight mode, we are in a team and have a plan and we generally go about the motions we need to go through to GET THROUGH the fight. Then, as we heal, we aren't given another plan and sort of just set free as survivors. There are no more routines, no more schedules, no more serious issues to worry about and so then the anxiety of all that we've been through starts to take place. Life after cancer, while it may seem ridiculous in comparison to what fighters go through during cancer treatments, can often be the most challenging part of cancer... at least mentally speaking. The article interviewed a few cancer survivors and mentioned that some people even go so far as to just sit in the chemo chairs on the days they used to come for a variety of reasons... one being that they felt safe and taken care of in that chair and another being that it was routine that comforted them. There were some really great stories in that article and I am so very sorry that I was not able to locate it today. Perhaps it will find its way back to me. In any case, the point was so spot-on... life after cancer really can be the most difficult part of having cancer. And, I'm happy to read that others are starting to see this and more importantly, there are SO MANY survivors that this has now become a new topic of discussion.
I hope that you share your stories with me and comment below. Love and hugs. Have a happy day!
I had planned to write another portion of my medical history today to help complete the story, but then realizing that I'm the most successful procrastinator on Earth I internally deliberated the importance of getting to my Christmas post now before I miss it. Plus, sometimes when I review too much of my history through cancer, it triggers anxiety which I've been fighting off lately with the added stresses of my life that pile on each year (of which I'm extremely grateful). Just before I opened up to post this, I was browsing Facebook and came across this re-posted by a friend of mine through a Facebook Page called High Anxieties:
Of course, I see this as a literal sign to post something a little lighter in subject tonight because I have just about every symptom on the list there and don't really need to trigger on a full attack just before Christmas. And so, with the rapidly arriving celebration of the birth of Jesus Christ, our savior, I switched course.
This post will be a difficult one for me. I'm not religious. Religion is a man-made business... but I'm not against it either. I love my parents' church friends and they are absolutely huge contributors to my health and well-being through prayer and support. But, I don't necessarily feel as though I fit into one specific religion fully and therefor find myself in a predicament to commit to one church and/or religion over another. I consider myself very spiritual. I believe in God. I believe in Jesus as our savior. I truly feel that my relationship with God is a strong one, through prayer, thought and action. Beyond that, it becomes confusingly complicated for me. I'm by no means a "thumper" of any type and quite frankly don't care for people who push their views upon me. I'd rather do my own homework on my own time and make educated decisions myself rather than as a result of others' opinions. So when I get to the story below, you need to know this about me because this experience I am about to share publicly puts me in a very vulnerable position, one for which others may discredit me, starting with this simple statement: "I experienced personally the healing hands of Jesus." BAM! Hitting like a book across the face. There it is.
Months. This experience with Jesus took me months to talk about. I was so scared that people would think I was reaching for something, anything, to heal or cure me of cancer that if I spoke of this personal experience they would think I was a whack job. I've seen and heard of so many stories of seeing Jesus in food, or clouds or window panes, or so many other ridiculous places and each time those stories caught my interest, I immediately discredited every single one of them with my judgmental, artistic and analytical self. I also did the same with my own personal experience, not wanting to believe it as an experience, but rather a dream. So when I finally started telling the select few people what exactly I had experienced, I made absolute sure that they knew I was open to the possibility of this just being a dream. But at least I had started to share it with others, I suppose. Baby steps. Every time I spoke of it, I felt a rush of energy through my body, the same rush that I felt during the actual encounter. That energy has faded in me over the years. But now that I am dredging it all up again, I can feel it once more. The more I shared this story, the more I began to BELIEVE that it really and truly was not just a dream. Yet, to this day, I falter and often lose my faith and trust when I need it most- scan days and biopsy days.
Meeting Jesus- my simple and short version:
After my hip/femur reconstruction (which I've not yet posted about but will), I was home recovering. I slept with an abductor pillow between my legs while on my back. One night, in the middle of sleep, I awoke. Out of nowhere and for no reason, I opened my eyes as if I knew something was happening, but did not know what. I turned to look at my then-husband who was sound asleep and then I took a peek at my dog laying at our feet who was in dreamland. I was confused because that dog was so in tune... she could sense earthquakes before they hit. Amazing. So when I saw her completely unaware, I decided my feelings must be off and I rested my head back on the pillow, but remained wide awake. I was calm, overly calm for having just woken up in the middle of the night feeling something was going to happen but not knowing what. Then in mid air, a light began to appear. One would normally freak out about this, I would assume. But I was just so inexplicably relaxed. It grew larger and larger and came closer and closer to me. As it floated above me, I knew it was Jesus visiting, even before He took partial form. This light transformed into the SYMBOL of what we know Jesus to be, the images of Him in His human body. Without words, He informed me that indeed it was Him and He is pure light but for my own sake, He was forming into our recognizable icon. I saw this light once before in surgery and now again this night. It's no light we can reproduce here on Earth; it's immensely illuminated and a different kind of light. (I'll share that other experience another time.) His face took form, his shoulders and arms appeared all the way to the very tips of his fingers. His body began to take shape and then faded off into His light. He hovered over my heart with his hands flat and crossed and without a physical touch or a single word spoken, a rush of energy poured through my entire body sourced in the heart. I was being cured of cancer. I knew this was the intent. I was informed, again with no words, that I was "CURED" and would never again need to worry about cancer.
That's a powerful statement. Cured. (Not healed, that's a comparison conversation in itself... being cured is different.) Never again will I need to worry about cancer. Yet, every time I go for scans every 6 months, there's that chance of cancer, isn't there? But there isn't. I AM CURED! Why do I not trust this?
My purpose in life is to make others happy. It is as simple as that. That realization came through Jesus' visit as well. Clearly there's a plan here and I don't know what to make of it, but it sure would make life a lot easier if all I actually did worry about was whether or not I was making others happy. Give happiness to others and live on. Just as quickly as He appeared, He dissolved away into nothing. It didn't take me long to get back to resting in comfortable sleep, but I did find that when I breathed deep through my heart, I could feel the curing, healing energy He gave me, through and through.
In all honesty, I don't believe He had just given it to me then... I know it was there the whole time; He just needed to show me where to find it. We all have these healing powers within us, we just need to locate the source in our hearts to use them... and it's not easy to do if you've never done it before. In fact, it's not easy to keep doing... it's something that needs to be exercised often, like muscles. Now if I could just remember my own words now.
The next day and the days following this experience it was all I could think about. I asked my then-husband, an atheist, if he had seen or heard anything throughout the night, but he had not. That personal visit was specifically and solely for me alone, which I had presumed. Naturally, I began to question this whole ordeal and even partially discredited myself, but I wanted to believe, and so eventually that belief became stronger than the doubt.
Could this be why I am cancer-free today after being given only six months to live 8.5 years ago? I never received treatments, only surgeries. It is unrealistic. And I have more stories from the years past to share that attest to the strength of this belief and encounter.
Jesus saved me.
He saved us all and one by one, He is saving us again... over and over... whether we realize it or not. I am so thankful for Him and while I know I often fail at making others happy, I know I have a desire and will to accomplish this for Him and for everyone else. So this year, my prayer for everyone is to make your Christmas Day the happiest day of this year! It is, after-all, the celebration of the birth of our savior, the Lord, Jesus Christ, who wants us to, simply put: be happy together.
I love you all, thank you for reading. Please share this with everyone and I'd love it if you would leave a comment.
Here we go with the worry today, and yesterday. I started having upper stomach cramping yesterday, which was pretty painful. Cancer patients/___________ (alternate word for survivor, which by the way, has horrible synonyms on thesaurus.com: "residue, debris, leavings, legacy, oddments, remnants..." this is not helping... "scraps, surplus, trash..." WINNER, I want to be cancer "trash!" Who is the person in charge of proofing these synonyms because we need to have a meeting... "odds and ends, orts..." THAT is IT. I'm done. Obviously there's a better word for "survivor," I've just not found it yet and this is clearly not my resource.) Anyway, if you've ever gone through cancer, it's quite possible that you have created two pain scales as I have: My "normal person" scale and my "cancer fighter" scale. It matters because when I say I have pain, an 8 on my normal person scale is really only a 2 on my cancer fighter scale. This should give you just a glimpse of what we are all capable of enduring. So, yesterday, my pain was about a 6 on the normal person scale and today it was about a 3. Either way, there's measurable pain which of course creates alarm for an anxious person. Having been through Hell and back, I prefer not to visit there again, so any warning that could tug and drag me back is not taken lightly. Of course, there's an unlimited amount of possible diagnosis options to choose from if I do a web search of my symptoms, but I refuse to do that again. DO NOT DO THAT! (There's my little word of advice for you today, if you have any shred of anxiety, and you have an ailment at all, do not research it on the internet; just go see a doctor.) I learned that lesson the hard way after I was diagnosed with cancer in the middle of my state of shock. I found ALL the worst outcome possibilities at a time when I was already facing the worst possible outcome which made all possibilities VERY POSSIBLE considering my current situation at the time. So, here I am today, still hoping that this cramping will vanish as of tomorrow, after all, it has improved. I'll give it a few days... which means I'll probably end up in urgent care on Christmas Day because I didn't want to go in at all. Only time will tell. I'm sure that my past experiences are affecting my choice to just ride it out right now, and I know they are playing a role in the worry about something that could really be nothing. Meanwhile, I try to focus on the good: my healthy family, our beautiful home, wonderful friends, supportive family and the upcoming celebration of our Savior's birth.
As a follow-up to my previous post "Feeling the good while remembering the bad," I thought I should complete the beginning story of my diagnosis. I ended the last post with "I could have cancer?"
It was on that list of possible causes for the vision problem, but they tested my blood for markers and all the tests came back negative. Denial. No way. I’m not that “one in three” that the health teacher spoke about in high school. Nope… I’m one of the other two.
So, I call my mom. That’s always the first thing I do. I call my mom. I’m more than thankful for her at this point in my life and happy that I had previously come to the realization after my teenage years that she is indeed not my enemy but quite the opposite. I’m 31 at this stage in my life. She calms me down. Helps me set up my scans and books her flight to be with me. I’m somewhat in a blur, but still functioning properly during all this. The days go by. Not one day goes by without the thought of the possibility that I may have cancer. My neighbor, whom I’m not too close with tells me that It’s in the bone and most bone tumors are benign. She’s not a doctor, nor a nurse, but I’m totally banking on her expertise in this area at this point because it’s all I have right now… “Most bone tumors are not cancerous… they are benign.” I don’t even care if this is true or not, it is for me now! I’ll take what I can get. Benign. It’s nothing.
The tumor in the femur had cracked the bone as we had found in the x-ray and MRI, so my Naturopath had sent me to another doctor for this. He put me on crutches until we could determine how bad it was and what to do with it. Meanwhile, I had a bone scan, a full body scan, and a biopsy set up.
The bone scan is easy enough to do… if you’ve never had one, you just lay on a cold table with some straps on your wrists to keep your arms at your side and a pillow under your knees. They also give you a nice warm blanket, a pillow for your head and then put a giant rubber band on your feet to keep them together. They lower a plate down to your nose and you slowly slide away from the plate. It takes about 45 minutes, unless you forget to pee prior. Then you have to re-scan. Oops, lesson learned… remove everything from your bladder and bowels prior to having bone scan. Won’t make that mistake again. I suppose that’s why they have a restroom attached to every bone scan room?
Like most people, I had to wait to hear from the doctor to get the results, which takes days. Meanwhile, I have a biopsy scheduled for the tumor in my femur. My mom and then-husband escorted me in for the biopsy. I’m fuzzy with my memories already at this point… since the words “tumor” and “cancer” came into my personal vocabulary, but I'm not completely shocked and spaced out… yet. I remember being in pre-op. I remember the nurses being so kind and gentle. I remember my mom teaching me breathing techniques because I was so nervous. I've not yet had a panic or anxiety attack at this point in my life. This was my first surgery. My grandmother had odd reactions to anesthesia I remember, so I’m a bit overly concerned. I feel like I have a lot of similarities with her, but I know I am not the same. The resident doctor walked into my curtained-off section and proceeded to look at his clipboard and told us that he had the results of my full body scan. I asked him to please wait to talk to us until after the biopsy as I just needed to breathe, pray and get through this surgery. He seemed to push the issue... so much so that my mom agreed to walk around the very thin, "not a wall" curtain thinking he must have good news because he was so insistent on giving the results to us after we asked him to wait. Paraphrasing, I hear something like this:
“We found a large mass in her left kidney. So large that it’s pushed the kidney downward to grow. We think we will likely find kidney cancer in her biopsy today in her femur. Your daughter probably has stage IV kidney cancer that has metastasized into the bone and I would suggest she get her affairs in order because at best, she has about 6 months.”
Pure Panic sets in!
Machines start beeping!
Anxiety takes over!
I’ve lost it and am now sobbing and freaking out!
My then-husband was telling the doctor to keep it quiet and trying to calm me down. My mom rushed back over to my side....
The nurses and whomever else all rushed in and immediately put me out. Or maybe I passed out, blacked out… I really don’t know. I just remember waking up post-op from there.
I do know that I will never forget the way that I found out about that second tumor and having cancer. That doctor should not be a doctor. I truly believe that this information and the way it was presented to me has a direct effect on my perception and fear of cancer today... it could be the contributing factor that triggers the panic whenever I go for scans or whenever I have a small ailment or illness. Would my life be less worrisome had I found out in a more compassionate manner?
Be kind. Be compassionate. Be empathetic.
It's the holiday season... a time to be grateful, to bask in the warmth of our hearts and share love and empathy with all those around us. It's a time of reflection and realization. I thought today might be a good time to review some of the tough stuff that I've been through- the beginning. It reminds me of what we are able to endure during the dark hours. Sometimes my walk down memory lane is not all sunshine and melted chocolate filled with strawberries and sweetness, some roads are shadowed by the old, heavy branches of dead trees and sounds of creatures that seem to haunt. These feelings often rush through my body as if they are happening all over again but then I am usually able to pull myself forward to the current moment of: BEING HEALTHY, strong and thankful. I've been through it, it's done... remember that. Let's enjoy the season with happiness and deep breaths. So here's a bit of the beginning:
This part of my life is so distant and was not all that important to me until after my diagnosis of cancer. (I say that as “my diagnosis of cancer” rather than “my cancer diagnosis” because one therapist mentioned to me not to own it, never own it… we’ll get into that later.)
I was ill with what I thought was a cold for a couple months. While completing my post-baccalaureate degree in Art Education at Arizona State University (a two-year program that I petitioned to finish in one short year), I became sick. Perhaps I pushed myself a little too far too fast, or maybe I’m just trying to find reason for this issue that seems to be the first domino in a long and winding line. Friends and family insisted I check for pneumonia. I was fatigued and had all the symptoms of just about anything you look up on the internet. I tried to explain it away because of my school schedule and workload, but I could not deny that I wasn’t recovering. So, after a few doctor appointments and rounds of antibiotics that didn’t do anything, I went in for the pneumonia x-ray. Nothing. But it had to be something because I was in pain and not myself. I was coughing and so tired all the time! Finally, an emergency room doctor one day thought to test for Valley Fever. Positive. Well, at least we know what it is now. Valley Fever comes in the form of a fungus that lives in the Southwestern United States of which only a very small portion of people are allergic. Guess who!? Yep… I’m one. There is anti-fungal medication, but it is not delivered unless absolutely necessary, and my case was considered mild so I did not need it. I was at near the middle/end of this approximate two-year health issue when I moved to Orange County, CA in 2002 after successfully completing that teaching credential program with honors. I secured a job teaching middle school art in California and was set to begin the following fall season. Very exciting! Here we go…
Orange County, CA
My health seemed mostly stable. In fact, I felt like I was in the best shape of my life when I was preparing for my first marriage in 2004. I was of sound weight, had ample energy. But, I knew something was a little off. I attributed it mostly to stress and Valley Fever. I had tested for Valley Fever at one point to see if it had run its course since I was feeling much better, but still sick often off and on. The Valley Fever was gone! YAY!!!! I get to move forward with my life and not worry about that. (This time of my life is still a distant memory. I have since pieced together the parts I personally deem important or possibly a piece of a large puzzle that I often find myself trying to put together… as if once it’s all put together, I’ll have the recipe to prevent cancer.) But then I began having vision problems. Major vision problems. The optometrist noticed some odd happenings and recommended I go to the opthamologist. The opthamologist said it looked as though I could have some detachment in the retina but he really could not say for sure and told me to watch for flashing lights, like as if the paparazzi was flashing cameras on me (right, because I know what that’s like). OK. So, then I’m referred over to a retinal specialist… and this is where the real fun with my vision begins.
Sometimes you think you’re headed in for one specific thing… other times you know you don’t know what to expect… and then there’s those times when what you’re informed of is just downright shocking and almost unbelievable. This was one of those times.
The retinal specialist, who was so very kind and extremely accommodating to my near anxiety (I say “near” because I didn’t really have anxiety issues much before cancer, but I did tend to get nervous for big appointments), that I almost felt worse for him than I did myself. Almost. He informed me that I had what was called “Pars Planitis with Macular Edema.” Basically, that is a part of my eyeball inflamed causing a fluid buildup that ultimately affected my vision and could potentially become so bad that it causes blindness. OK… I’m a visual artist. I have been an artist as long as I can remember, literally. I have built a nice resume as a professional artist and now I teach visual art to kids. My favorite part of art is color theory. SEEING COLORS!!! How do I continue to make art if I go blind? Obviously, this was a huge blow to me! A threat of going blind would be devastating for anyone, but I felt like my world would crumble because visual imagery is my LIFE! Fortunately, this is something that can be treated and managed, but with side effects. Usually it is treated with steroid injection in the eye. Let me repeat that… A NEEDLE IN THE EYE! Luckily, I got the needle just ABOVE the eye in the eye socket. Which is bad enough. Though, if that doesn’t work, the doctor will put the needle directly into the eyeball. (Think “Clockwork Orange.”) The steroid injection eventually causes cataracts in 100% of patients. So, I have that to look forward to now. And, while it isn’t all that painful when administered, it’s just absolutely grotesque (to me anyway, maybe most of you can handle watching a needle head towards your eyeball, but it’s pretty nerve-wrecking for me)… even just the thought of it is just gross. Then, shortly after the injection, the whites of the eye become bubbled out with red blood. As an artist, I began to imagine all sorts of things that could go wrong with this of course, but the worst part is when the doctor told me that I would be fine and all went well, “just watch for blood; it will be normal for the white of your eye to turn red and puff up a little as the blood enters between the layers of your eye, but if it starts oozing out, you’ll need to call me right away.” UHHHH… WHAT?!?!! Did that just happen?! Some doctor just informed me that my eye could bleed from the white part!?!?! OMG… I’m going to pass out if that happens, that’s all I could think about. Of course, every minute of the day, I was checking my eyes in the mirror. The kids at school either cringed or thought it was the coolest thing they’ve ever seen. Fortunately, that never happened to me. THANK GOD! The red bloody eye stays bloody for quite some time. It slowly fades off. Though it’s not painful, it’s not something you can just hide, especially in a middle school classroom. I was taking too many days off and ran through my sick leave quickly. So, with this last round of edema that popped up in 2006, I chose not to have the injection again and go with an oral steroid instead. (sigh of relief for me… dodged a bullet or rather, a needle in the eye.)
During this time, I had seen a few different doctors. I decided to find a Naturopathic Doctor. Given my newfound fear of doctor visits, I thought I should try the natural route. I believe in Naturopathy and I believe that our bodies have the abilities to heal themselves if properly nutritioned. I also believe that treating our bodies as a whole is more beneficial that treating a symptom, as most modern day MD’s practice. So, I started on my naturopathic journey. (More on that later.) In California, it is legal for Naturopathic Doctors to be primary care doctors and so after a few initial consultations, I found one I absolutely loved! So, while she was working on boosting my immune system with drips and supplements, I continued working out, eating healthy and trying to figure out why my vision was so bad in spurts. (Side note: We need to advocate for Naturopaths to be legal as primary care physicians in all states!)
I found that this vision problem that I was experiencing is known to be a “symptom” of something larger. Of course it is, right!?! CLINK! I’ve somehow managed to find myself in the middle of a set up domino system of bad happenings. So… what’s the list of options for horrible issues that could be causing this vision problem? Do I get to pick the least problematic? The one that is the lesser of all evils or am I going to assume it’s going to be the worst? We all assume it’s the worst, don’t we? As you can guess, the list entails just about anything and everything. I say this literally, not metaphorically. It literally could be anything because it is related to an autoimmune disorder. Of course, my brain immediately finds the worst case scenario and I start praying. Not that I never prayed before, but I think the vast majority of us tend to pray a little harder or a little more often or with a bit more spirit when we feel we are in need. And, that’s where I was at this point. COMPLETELY LOST.
So, I went through testing… several doctors, lots of blood tests. I did my own research and was actually hoping to get a body scan because I KNEW there was something wrong with me before the doctors even confirmed it. Ask my BFF… she will tell you “You kept saying you knew your body was off. You said it!” So, of course, in our lovely nation, with our “healthcare” (or lack thereof) system, I was not able to get a scan just because I wanted one because I could not afford it out of my own pocket and even if I could, I’m still not sure I could have gotten one.. So, I kept on searching.
I have a very close relationship with my mother. So, she would fly out from Chicago and take me to these doctor appointments as I grew a little more nervous each time.. I would find a doctor, go, come home with nothing new. Find another, go, come home again with nothing new. At one point, one doctor told me it was all in my head and I honestly wondered if he was right. My mom and husband kept me calm for the most part. I was also feeling good about keeping my health up with the Naturopath. Still, I knew something major was wrong. I wasn’t sure I wanted to find it but I knew I didn’t want to go blind so what choice did I have?
We always have a choice; we just don’t always see it.
My life was busy. My life was good. Overall, I had very little complaints, considering. I married in November of 2004. Thankfully, with the whites of my eyes white! Then, after selling our townhouse, we moved into our house with a yard close to the university my then husband was attending for grad school, close to my aunt and a cousin with his family… life was great. We adopted our baby-dog, Salvadora Dali (Sally for short, my mom used to call me Sally as a child and it wasn’t looking like I was going to be having children of my own at this point to pass the name down.) Sally was hands down, THE best dog ever and more like a daughter in a furry body with four legs and a tail. We had money for vacation. I was building my name as a professional artist and working as an art teacher. And, I continued to try to get my health under control. But, eventually, I was out from work so often that I started having to pay for my own substitute teacher. I was overworked and beginning to feel fatigued again. I made a difficult decision to quit my teaching job on good terms, thankfully.
I wasn’t quite sure what I was going to do for money so I set myself up with some credit cards just in case. My then (now ex-) husband wasn’t making enough to support the house we had just purchased, but I could not continue with the stress of the job I had while fighting to be healthy. I wasn’t sure this was the right decision or not and I miss teaching there very much, even to this day. It was a great staff, a wonderful school of children and supportive, friendly administration. It was not an easy decision to make, but I knew I was sick and I could not afford to keep paying for my subs… nor was it fair for the kids to have subs that often. So, I went into real estate knowing I could start fairly quickly with little investment. I did that alongside a home-based business to make a little money, but it was so very not rewarding. Now my morale was diminishing. I was a real estate agent for about a year while still going through the search for this health issue that was causing my eyes problems.
Pain in my right hip lead me to seek help from my Naturopath who was now officially my general practitioner. Now, hip pain is a common monthly occurrence for me because I’m a freak of nature. I don’t get abdominal cramps during my menstrual cycle like most people; I get hip pain instead. The kind that makes me want to lay in bed and not move any muscle from my stomach down for an entire 24 hours. Whatever. But when it didn’t go away one month, then another, my naturopath said “Let’s get a scan.” I know I had been asking for this scan but the thought of there actually being a legitimate reason to have it now scared the crap out of me. Seek and ye shall find. Maybe I should have ignored my problem so it would have gone away… that’s what I was thinking anyway.
She recommended a scan because I was currently taking that oral steroid for the vision problem. Over time, the steroid can cause something which occurs in the hip… She was looking for Avascular Necrosis. It was a longshot to have this given the short amount of time I was on the steroid. So, I wasn’t too concerned about that, but was more concerned that I had to have an MRI now. I’ve never had one. I’m slightly claustrophobic, not too bad, but enough to make me nervous about the scan… not to mention the fact that I might just find what I was looking for… and I certainly wasn’t ready. I’m not a fan of looking for problems… they generally tend to find their way to me without looking. AND… they told me it would require an IV (which to me meant hooking me up to a tube with liquids, which I had not ever had in the past… freak out time!)
I won’t go into the details of the stress of having this MRI run, which in retrospect were not nearly at the level my stress of scans becomes now- NOT. EVEN. CLOSE. It actually wasn’t that bad. Just loud. They gave me earphones with music to listen to and since my head was not being examined (which has now become a running joke with everyone who thinks they should scan my head all the time), I didn’t need a helmet or get put into all the way. We were just looking at the hip. The IV that this anxiety girl was so worried about was just an injection without the tube. Lucked out on that one… just put that domino back upright before it hits another.
The ND (Naturopathic Doctor) called me a few days later and immediately said “Hi Amanda, Where are you? I want you to sit down and take a deep breath.” While this of course made me feel like I was going to die immediately because that is never a good thing when a doctor says that, I was thankful she was so kind and caring when she did say that. I trusted her… and still do to this day. If that woman called me today and said “Hide, the sky is falling!” I totally would! So, I sat down and took a deep breath. I honestly don’t even remember where I was when this happened, but I do remember that I was with a friend at the time consoling her about money issues and we were headed for ice cream after an errand of some sort that I had to take care of. The doctor said “As we expected, the good news is that you do NOT have necrosis. The not so good news is that we do see a large tumor in your leg bone near the hip. That’s probably what is causing the pain... (words fade to mumble in my memory because I’m stuck on “tumor.”)... full body scan… cancer… maybe benign… bone scan…” I’m really not sure about all of what she said anymore.
Long silence. I hear nothing around me. I forget where I am. My thoughts? I don’t hear them. I don’t have any.
Complete, fragmented immediate meltdown.
My day of consoling my friend just took a U-turn. I need to go home.
I could have cancer?
I went through routine check-up scans a week ago today. I ended my last scan post with "The Doctor is in." This time around, I was quasi-confident, quasi-scanxious... I wasn't sure if I was up or down, content or uneasy, complacent or hopeless. Since my last scans in June sent me through a summer of tests and biopsies, which miraculously all turned out to be benign, I was somewhat expectant to have only good news of no new issues to probe into as they've all just recently been tested. But then again, The little voice in my head reminded me that if there's something new happening, sometimes it could be possible to not find it right away and after six months, perhaps there could be something there that they will need to test and in it they will find cancer. (This is the scanxiety, the downward spiral of thorns that spits you into a pit of worry and depression after tearing through your body which affects not only a mental state but a physical one as well, if you let it hit that bottom. I seriously believe that I am THE ONE person in the world that gets this worrisome with scanxiety.)
Fortunately, I was pre-occupied with some delays in the clinics due to computer issues. I also brought my laptop with me to get some work done. Why in the 8.5 years I have been participating in routine scans I have never brought my laptop is now alarmingly curious. So, I was keeping busy and that helped. Then, everything sort of just went quicker than it usually does... literally... not just because I was per-occupied, but I didn't actually wait as long in any part of this process as usual.
Long story short, I received the good news! Another six more months to life life as I know it until my next scans. Meanwhile, I have some new things to worry about... ha ha... normal human stuff for a non-anxious person, but I'm not normal so of course, I immediately assume the worst-case scenario.. I have a mole that likely needs to be removed, sliced up and tested- fantastic... maybe even more than one. And, I have to have a follow-up mammogram in February from the biopsy in August. That means we'll be checking for cancer in January and again in February. So much for a six-month break. A double whammy of worry for this freakazoid. (Cue the guilt of being a healthy cancer _______ while there are others hanging on to their lives by a thread.) The hardest part to remember is that I'm fine, I'm good.. If they find something, we WILL manage it. Cancer is not welcome in this body of mine and I will eliminate it through belief, family support, doctor assistance, faith proper supplementation and intrinsic exercises. I did it once before and that was certainly worse than anything they could possibly find a second time around, right? (Let's just bank on that.)
I haven't made my appointments yet. I've been told NOT to live my life around cancer. HA HA HA... how do you do that? Isn't health a top priority? Don't we need to work around our health? I'm not saying I'm going to ignore these issues, but I AM going to at least enjoy the next two weeks through Christmas before I start thinking about more tests. That settles my mind a bit and I'm ok with waiting two week in an effort to preserve a little sanity and serenity... that makes the wait worth it right there.
For now, I am thankful.
I finished another commission piece the other day, which is the photo attached to this post. My family and I went to see Santa tonight! We had a lovely dinner and we've made plans for tomorrow. We have some financial stress, but who doesn't around this time of year and we are so very blessed to have a roof over our heads, food on the table, jobs to provide income, parents that are supportive, healthy children and great friends! I'm always fresh with gratefulness in the weeks following good scan results.
My family and friends are all immediately aware of scan results. I just returned from Houston Tuesday which means scans went VERY WELL on Monday. It was the first time in a long time that I didn't even shed a tear. No lumps, bumps, spots or wiggles to have to probe and test this time around so I will be celebrating Christmas worry-free (well, as worry-free as I get, which is never fully free of all worry, but close enough for me for now). AND... even better, I can make more plans! I always have a very difficult time making plans dated after scans as I'm never sure of my return date and hate to have to cancel anything because of medical issues. I don't mind canceling things, but for medical?! It's simply a sinking feeling to have to do that. Now, to cancel because of mood or bad hair or a to-do list or basically any other reason... no problem... rude maybe, but preferable over surgery.
Tonight, out to dinner with new neighbors. Tomorrow, work then out to dinner with two other couples, also neighbors. Next Friday begins winter break for the schools so prepare for kids! Next Saturday, plans with family. The following Monday plans with other family, then Tuesday is cookie day with the BFF and kids... the list goes on! THANK GOD for good scan results! But this is not always the case. Sometimes the scan results are not good at all. It's then when we most need to start planning happy days. So plan anyway! (As I shall start doing now that I've typed this out to everyone else - "do as I say, not as I do" no more!)
Today's agenda: PAINT! I plan to finish some commission work for a local restaurant today so that I can drop them tomorrow morning and then have dinner there tomorrow without cringing about not having all the artwork completed... I'm really feeling cowardly because of this dawdling of mine on this project, but I'm looking forward to painting today after I post this. While I like to think about the serene, uninterrupted perfect painting experience, my mind is always twitching around bringing up issues I don't want to deal with which lead to internal arguments. Focus on good, if only one day at a time.
Today is... HAPPY! ...and your day is as well!
Always have something to look forward to!
Living my life by “scan time” is my tether. Most of the time, my scans are 6 months apart which to me basically means that each time I get the "all clear, no cancer, no biopsies" it equates to "6 more months of life." Being a “scanxious” person, I have developed and implemented a routine that makes me feel just a little more comfortable when I go for scans… it’s a bit ridiculous, but it works for me and I plan to keep it that way. I travel to Houston for my scans because I believe that my doctor is THE best doctor on the planet and if I could put a big protective bubble around him, I would. I arrive the prior day, always with my mom because no matter at what age, mom knows best and will always be there to comfort me or slap some sense into me… whatever is needed- or rather, whatever she thinks I need at the moment. We stay in a nice hotel and eat a hearty meal for dinner. No food or drink when the clock strikes midnight, Cinderella. We always pick a movie prior to bedtime- it keeps my mind occupied partially at least.
I love traveling, so having a vacation booked also helps me keep my mind off scans and the possibility of having cancer. It gives me something big to look forward to rather than something big to scare the caca out of me. It genuinely makes a noticeable difference in my mood and I highly recommend scheduling something for yourself to look forward to at all times, even if you’re not a cancer fighter/_________ (change that word: read my first post if you don’t know what I’m referring to.). If you can't afford a vacation, planning a special night with family or friends that is out of the ordinary has a similar effect. I usually attempt visualization of my future escapade while lying in bed wide awake not wanting to sleep for fear the night will inevitably fly by too fast and scan day will come sooner rather than later.
Lights out, alarm bright and early. I head to the doctor’s office for check in… and here’s where my psyche starts playing a game with me. I've developed quite an elaborate routine that the nurses in clinic and outpatient imaging both agree to which results in much less anxiety for me. I cannot go into detail here but I will say that I'm likely the only one that manages to do this at the grace and mercy of all my nurses. Bless their souls! Of course, the veins in my arms are pretty much non-existent and I’ve come to terms with believing they each have a personality of their own- I should just name them. How do they know they will have a little hole in them soon? Seriously!? They move! (Rolling Veins) So, having gone through this routine too many times already, I quickly learned that my hand is a much better option for a needle than my arm. Not only can you see the vein in my hand, but it’s much more of a FLAT surface which helps me psychologically because I absolutely cringe at the thought of bending my arm with a needle or IV in it. Just make sure the alcohol is 100% dry before inserting that needle please or it stings horribly! (Nurses must dread my appointments with all my needs.) Fortunately for me, the people who are caring for me truly do actually “care” for me. For my blood draw, I am distracted with pleasant conversation as the nurse struggles to suction out about 17 tubes of blood, depending on the day and the order. Just like my veins, my blood seems to have a mind of its own too. I know that keeping my body warm allows the blood to flow better. I also know that pumping my fist and getting my body moving sometimes helps too. In addition to these techniques, the amount of water I consume the days prior to this extravaganza has an effect. Yet, sometimes, no matter how great I think I’ve done preparing for this draw, the blood simply retreats and I wonder if my vein is going to just be sucked out into that little tube one of these days… poor vein. It’s a great vein though, I love that vein. It’s definitely one of my favorites because without its presence, I’d have more pain and agony every 6 months.
Once my labs are complete, I am ready for the CT scan. It’s here that my brain goes into panic mode because these are the images that are going to show whether or not there’s something to biopsy… the scan machine… the God proving machine… the medical version of a crystal ball. Oh, the power that machine has over a mind is quite amazing. The standard chalky, milky substance they usually give to patients dehydrates me so quickly and badly that I cannot lay on the scan table for more than a minute at a time without having to rush to the restroom and they cannot inject the contrast, so this princess receives the alternative cocktail which is like a metallic, sweetened water. I’m not complaining about this at all as I much prefer water over liquid chalk. I'm just surprised they haven't served it to me on a silver platter while wearing white gloves. Now, I wait... in my hospital gown and pants.
For those of you who have had scans, you know the wait. For those of you who have not, you have to wait an hour for your cocktail to get around your body before they can scan you. So the WAIT is one of the hardest parts and this is wait number one of two, the second being the wait for results, which is far more challenging. I sit there and think a million thoughts. The TV is on, but I can’t watch it because I’m preoccupied with praying, trying my hardest to believe that I have been cured by Jesus, but still questioning it. Why? Why do I do that? It does no good. I am sometimes able to calm myself, but I sometimes (ok, "usually") just spiral down and end up in tears. (Watch for the future post on the story of the cure from Jesus.)
Maintenance after cancer still feels like having cancer- at least for me it does. I know it's not as bad, but when you could potentially go right back to having it... well... it feels the same. I recently read about studies on this subject with regards to after care as often being the hardest part of cancer and wow did that ring true to me.
On any given scan day, my life can change in a single moment. It is the day that I get to live for another 6 months until the next scan or it is the day that I begin scheduling more procedures which could ultimately lead to fighting cancer again. So, this awareness NEVER GOES AWAY. How does any cancer fighter/___________ NOT live their lives around cancer. I'm still working on figuring this one out. I just scheduled a cruise for March right before scans. In the back of my mind, the thought that I may have to cancel this vacation if I don't receive an "all clear" lingers and haunts me.
They call me back. I almost always cry slightly on the scan table out of nervousness. I always pray. I like that this particular place has a ceiling that has been transformed into soothing color changing lights. It’s a nice small distraction that makes a big difference. I always freak out a little when they put the contrast in because that’s what anxious people do. I’ve heard that people develop allergies to things… I’ve heard of stories where people were fine with contrast then suddenly became allergic to it and then had to be carted off to the ER because their throat closed… my mom is allergic to it and went to the ER once… did I inherit that from her? We’ll find out one day, or not… meanwhile, I tug at the neckline of the gown so it's not touching my throat so that I can feel it better (that makes absolutely no sense at all, but I do it anyway). Then I feel the warming sensation within my body that the contrast creates... but there’s no use in worrying about it since I can’t change it. Yet, here I am, worrying about it. The thoughts are crippling, but I am unable to revise the scenario so I try to fight them off with prayer, breathing techniques and positive affirmations. At least I’m in good hands and if I die here, I’ll get some pain meds for it surely, right? Either that or I’ll have another vasovagal episode, pass out and not know what happened… even better. So why am I even worrying? Whichever path I end up on, I’m ok anyway: I’ll live through it or I’ll die and end up in heaven. It’s good either way, really, right?
I’ve learned that for every negative thought, I must find 2 positive ones to change the pattern and downward spiral. (That’s just another technique that sometimes works- I’ll tell you, one cannot have too many techniques stashed in the back of the mind because some will work while others will not and it may change next time around.) My vacation. Today will end. Tomorrow will begin. And then... eventually, tomorrow will be vacation day! Just make it through the day, as I always do!
After scans, mom and I have lunch at the appropriately chosen restaurant for a hospital, “Au Bon Pain.” Whoever was in charge of securing that deal needs to be spoken with. I realize the meaning is about good bread, but come on, there are so many other great options without “pain” in the name. In any case, it’s a quick lunch, I grab lots of water to flush out all the contrast, force myself to eat though my nerves always churn my stomach and we go elevate ourselves up to the 29th floor for results: the doctor’s clinic.
Walking in, I’m immediately overtaken by severe guilt. So much so that it creates a large lump in my throat. I’m probably THE most healthiest patient in this large waiting room of around 40 people and yet I’m obviously the one with the most anxiety. I have struggled with this guilt from the beginning. I look around and see the effects of chemotherapy on too many people. Some with walkers, some with canes, some in wheelchairs. Some have hair, some have wraps, some are swaddled in warm blankets hooked up to their fluids… some are sleeping, some are reading, some are chatting. Then there’s me. Most of the time, I’m the youngest one there, though I know I am not the youngest one with cancer (or rather, who has gone through cancer). I get jittery. I feel more upset right now about being nervous for myself while others right in front of me are fighting for their lives. I am not on their path and they are not on mine. I can only imagine and make-up what I think they are going through. Maybe if we all talked to each other more, we could help each other out, but there’s not many who care to talk about it, and rightly so, they have to live it every minute of every day… so I never even attempt conversation. I don’t particularly care to talk about it either most of the time either. I just flash nervous smiles to those I make eye contact with. My mom, on the other hand, has no problem talking… which is probably a good thing for me because it keeps me distracted and helps time go by. I so prefer her mouth moving rather than her eyes in a book. She loves to read. I didn’t get that gene passed to me. I hate reading. Sorry. I like drawing though… that’s an equal alternative, I think. But, I have no creative energy to draw while I’m in that waiting room. It’s pure nerves.
I get called in for a vitals check and immediately go into internal panic mode because surely my BP is elevated and my heart is already racing. I cannot recall exactly when this “white coat” syndrome started, but I do know that I didn’t always have it and it gradually became worse. Now, taking my BP is even nerve-wrecking and for no good reason. Of course, in natural form for Ms. Anxiety, I immediately assume those numbers are going to be so high that the nurse will become alarmed thus plummeting me down into the pit of self-destruction which will end with me in the ER lucky to live after horrifying procedures to assist me in regaining consciousness. OK then! Again, I do breathing techniques and look at my “happy” folder of images on my phone to try to “feel” what I felt at the time each photograph was taken. It works half the time. Now back to waiting.
I usually wait about 4 hours to see the doctor. He’s worth it and all the people he sees before me are worth it too. Now I’m in the room, after they weigh me and remind me that I’m “obese” on their charts, even if I take my 30 pound pair of shoes off! I’m not yet convinced the scale is properly calibrated, but that’s the least of my concerns, most of the patients in the waiting room could be trying to gain weight and here I am trying to lose it. More guilt melts around my body as we enter the exam room. Right now, all I need to do is try not to have a heart attack or vasovagal episode- just breathe and chill out already and try not to end up on the floor. CANCER WILL NOT KILL ME! I’ll end up subconsciously doing it myself if this nervousness continues. Thank God for planned vacations! I can visualize myself on that beach or cruise ship, soaking up all that natural vitamin D from the sun, drinking a tasty beverage in my husband’s protective arms and not worrying about the time at all for an entire week… and when I can visualize it, I can breathe in the feeling I get when I am actually there. Memories can create physical feeling. Good ones or bad ones… depending on what you focus on.
The doctor is in.
I’m being called to write a book… to write a book? I hate reading… and I don’t write. I know I need to produce this document in an effort to expel my experiences so that someone in this world today eventually finds these words and within them a sense of peace, hope and happiness… somehow. The meaning of this is far beyond my complete comprehension and that is only one reason why this book, or now blog, will be challenging on a monumental level for me. But, I need to write this, and so I will… and thus it goes…
The epiphany of the title came to me one day out of nowhere. Nowhere? Surely somewhere. I haven’t recently been talking about the book; the book I have known I need to write for years now but haven’t done a thing to start it, mostly because I don’t know where or how to start writing a book but partly because I am likely the best candidate to win a “Worldly Procrastinator of the Year” award. So where did this title enter my head from then? I think on it… knowing exactly where it came from but wishing it hadn’t because I hate reading, I don’t write and I have an overly busy life already as it is… ask anyone that knows me… I’m a busybody. “AS IF” I am going to find time to write a book… alongside running a business, supplementing income by selling artwork, being a part time stepmom, managing four dogs, making time to cherish my husband… this all on top of all the little day-to-day tasks that seem to be multiplied in my life. All of which I am GRATEFUL and THANKFUL for and am not mentioning them as negative aspects of my life but rather ALL that I can and am able to take part in… which is a HUGE accomplishment not owed to myself, but given to me… and there it is… the beginning of “Tethered.”
I am... tethered. I feel tethered. I will get into why in future posts and I'm sure I'm not the only one that feels this way, or maybe I am. You'll notice that the website is "tethered.life" and/or "tethered.us" rather than .com or any other option. I like those options particularly because "us" reminds me that I am NOT alone in this and neither are you and "life" is simply so fitting.
I am a cancer _______________. (Insert your own term here because the word “survivor” when put after “cancer” is hard for me to swallow and I know first hand that as a “fighter,” by definition, I wondered if I would ever make it to the grand status of “survivor” which meant opposite would be - gulp - to put it subtly - not a survivor… we all know what this means, but when I was “in it” I was consumed by it… to the point of shock, quite literally. And so, it only makes sense that we are currently all “survivors.” After all, we are all alive and therefor, surviving; are we not? So what word do we use for those of us who have “survived” cancer? I don’t have a word... yet. What’s more important is this: what word do we use for those going through cancer? THEY are the true survivors; they are absolutely surviving cancer! That term has got to go. (Feel free to give me suggestions through my contact page.)
I’m not just any “survivor,” but a living, walking miracle. And if you don’t believe in miracles, keep reading anyway, this is being written specifically for you.
I’m 40 years old as of today’s date. I am “supposed to” have been dead for about 8.5 years now. Yet, here I am… writing out my story and quite alive by all measurements.
This is not meant as a documentation of my experience with cancer but rather a testament to what we are able to endure and how we can move forward… at least a little… a story that hopefully emanates love, hope, faith, happiness and peace for others. I will speak of documentation, but I am mostly hoping that my story, complete with all my feelings and emotions, become truth and evidence for whatever is needed for whomever needs it. I will speak of God and Jesus as our savior. I will speak of my experience that lead to this FIRM belief that He IS our savior. I will speak of my turmoils facing this realization and the hesitation to admit it. I will speak of my hospital experiences, my medical history and the lost memories. I will speak of others I have met through the years, and a little on their experiences. I will speak of theory and hypothesis. I will speak my opinions and make comparisons.
I will put my life on a blank page for everyone to pick apart… in hopes that just ONE will find hope, joy and peace out of my terrifying, life-threatening experiences. Out of everything bad can something good be found, if you seek it. Now if I could just remember that when I go for routine checkups with “scanxiety."
I just finished successful scans and labs with NED (No Evidence of Disease) this past Monday. My next Houston scans are June 6, 2016 with a post lumpectomy mammo scheduled for February some time. I hope you will follow my journey and share with me yours.