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.
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.
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.