We'll start with the results first- NED! If you know anyone who has had cancer in the past and gotten good results, you know that being NED is a very, VERY good thing! It means that scans and labs resulted in "No Evidence of Disease." This last scan marked ELEVEN YEARS of my body being without any evidence of cancer! ELEVEN YEARS after a prognosis of six months to live (at most)... I AM that miracle... that hope that someone may need at this moment. Those cells in a person's body that we call "cancer," don't own them; they aren't yours and they're not invited to stay long either. I had cancer, but it wasn't "my" cancer... it was "the" cancer... and I was fortunate enough to rid of it... and I'm not the only one... so hang on to that hope if you're going through something right now! I'm glad that it's been eleven years, not only because that means "life" over "death" but also because it proves that we, as individuals, can overcome the impossible... and many of us do!
Every year is a milestone on borrowed time! I still come across people that wince over an upcoming birthday because it means they'll be one more year older. I have a request... please... never complain about your birthday and be someone that makes the change in others about celebrating special days because for cancer patients and survivors, a birthday is a bonus; it's a day to celebrate life and all the beautiful things in it. I feel a deep sadness in the center of my heart when I hear or see someone acting negatively about their birthday or flat-out refusing to enjoy it. God gave us each ONE life and it's not very long... the day you were born was nothing short of a miracle in itself and we SHOULD celebrate that! You get only one day a year to call yours, own it!!! And, own it with all the joy you can muster up! Next time you talk about your birthday, please imagine yourself sitting in front of a cancer fighter or survivor before you allow any words to come out of your mouth... and think about what it means to be a "survivor." (...that word we need to change)
This trip was not an easy one, shocking, right? (ha ha) No trip is easy. No scan is easy. No lab work or doctor's visit is easy... everything is amplified in worry after you've had cancer and it's more challenging for some than others. I'm that "some." I like routine when I go into something that creates fear in me and this trip was WAY out of my routine! I worried for over a month before heading to Houston for this one... I analyzed EVERYTHING that was wrong with me, I had doctor appointments for this or that and our kids' schedule was out of the ordinary. Then, I decided to sign up for an angel flight to see if they might be able to find one for us knowing the chances would be extremely slim considering they've only found ONE FLIGHT for me in the first ten years of me traveling to Houston. I wasn't sure I could get through it given the level of anxiety this time around. Of course, they found two- roundtrip! I wasn't sure I would be able to get on a plane at all considering my level of anxiety this time around... but a SMALL plane!?!? Well, I was really struggling at this point.
We ended up not taking the first flight because it was too far of a drive to the hangar on the day one of our daughters was scheduled to have teeth extracted... it was just simply too stressful for me with the tight timeframe. So we took our usual Southwest flight down. And by "we" I mean my husband and I... that's right... my mother decided to sit this one out... perfect timing considering we knew my doctor was going to be out and I was going to see a new doctor. Honestly, I don't know how I manage to live at all some days. So, normally, we fly out on Southwest, grab our reserved rental car, drive to the hotel (the same one every time), decide what to do for the rest of the day depending on what time we arrive then head back to the hotel for a movie and room service. In the morning, we get up around 6am, head to the clinic, go to the 29th floor, check in, grab my lab tubes, head down to the 16th floor, check in for outpatient imaging, get my scan cocktail and IV put in, then the tech will draw the blood for my labs from my IV because my arm veins are very sneaky little bastards and it's painful to be stuck in the arm when they're playing a game of dodgeball with the needle!! Not to mention... I'm a freak about the whole process to begin with. Then I head up to the 29th floor with my labeled and filled tubes, fill a little cup for the urinalysis and drop it all off with the ever-so-appreciated lab techs in the oncology clinic. OMG... they're so nice. I can't even tell you how much this ridiculous process they allow me to do helps with anxiety in me. Then I go back to the 16th floor and wait for scans, get it done, then go eat and head up to the big waiting area (usually for hours) to see the doctor and get results after they check my now very high blood pressure just before heading into the exam room. That's just bad timing... we need to change that part of the process.
Here's a video showing the beautiful oncology clinic I'm able to travel to... what a difference environment can make when you have to go through something so challenging. This is the 29th floor... I'm surprised they don't show you the views from the windows... I love looking out the windows, even in the exam rooms.
OK... so THIS time... Mom didn't join me, the hotel was under construction and we stayed elsewhere, they scheduled my labs AFTER scans, so my whole elevator ride routine was all messed up, there was a new guy in outpatient imaging who "wasn't comfortable" drawing my blood from the IV, it was out of control. I ended up taking two pills that day for anxiety... my doctor was out on medical leave (we'll get to that another day and my prayers are with him and his family every single day), I was seeing a new doctor whom I know nothing about when it's my doctor that I travel to Houston for in the first place... the angel flight corporation set up a flight FROM Houston for us, so I was stressing out about that (for NO REASON- who doesn't want to fly on a private jet comfortably without dings, announcements, lack of leg space, partially reclining chairs, small snacks and loud crowds?!)... Blank stares... I get blank stares in my head about my own issues because I really do realize how absurd most of them are and I try SO HARD to overcome them... I just keep going through it all and HOPE I come out the other end still alive and not wrapped up in a hospital somewhere for one reason or another. Cancer won't kill me... I'll manage to handle that myself with the anxiety and stress my brain puts my body through all the time because of what I've been through and what I know can happen... BECAUSE IT DID! PTSD... it's fantastic. Anyway... so I did push myself through, but not alone, never alone- my husband was there (he is the best calming factor... I love this man so much), the director of outpatient imaging was trying to help me on the phone in his car, the nurses in the labs were trying to help me... and it was THEY who found the solution for me and I am praying this will be my new routine... they found a caring infusion nurse to put the IV for me and draw the blood right there... OMG... that was so much easier than even my FIRST routine! I don't know why they just don't allow the lab nurses to put in the IV's in the first place. Whatever... it worked out. THANK GOD!!! I'm sure EVERYONE was breathing a sigh of relief after that extravaganza.
The rest of the day went as usual... we came up after lunch to wait and weren't in the waiting room more than 5 minutes! What the...???? I had absolutely no time to sit there and freak out internally about every single scenario that could possibly go wrong this trip and how it would trickle down into all other areas of my life... no time for that! It was nice. We went in, met the new doctor right away who was all smiles and very friendly. I honestly did not expect that. I think that's not really the norm, at least from my personal experiences. He gave me all good news which included some spots reducing in size and labs being spot on... and I'm sure HE was breathing a sigh of relief when he saw the scans and labs before he came in because I can't imagine anyone in that hospital not knowing my name by now. Bad news for me is not easy. I do my best to deal with it, but all those feelings and memories just come flooding right back in when I get bad news... and THAT is why I love my doctor as I do... he makes bad news OK to deal with. Fortunately, it was good news this time! ...and almost every time. There was one little area of concern though that I'm trying not to dwell on... he did not want me to wait a year for another scan as my doctor had said we would allow if this trip proved to be a good one... he said there are other spots they are watching. So, I'm going back in September. The good news on that: no surgery this time! I have another seven months to live life, and... it gets me through all our birthdays and my favorite season of the year!!! It will be a happy summer!!!
We celebrated, as we always do. We met with my friend Jennifer, her husband and our oldest daughter, now in the Navy, was in from Virginia to see us and her boyfriend who now lives there. I love spending time with her. It was a really great dinner, as all celebratory dinners are. Jennifer and I miss Katherine... no scan date goes without prayers to her and for her family. I always feel her presence around scan time... I wish I were as strong as she was. I am so thankful she was in my life for the brief time she was.. I'll always look up to her. I can only hope that some day someone might be able to take something positive from me so I could pay it forward.
The next day came... we woke up early to head to the hangar for our complimentary private flight courtesy of Corporate Angel Network and the company offering us the flight through them. Skipping security and crowds made a HUGE difference in my anxiety level, but I was still a little nervous to be on a smaller plane unsure if I would feel claustrophobic. What if I had a panic attack while in flight!?!? One of my coping skills is to seek solace in a restroom where noises are slightly more limited. I didn't know what sort of bathroom there would be, if any at all. I didn't know anything about this aircraft or people on it. I didn't have to do this... I could have just flown my trusted Southwest Airlines... the familiarity of the process and planes gives a false sense of security, I know, but even if it is a false sense... it's still a sense of security which technically makes it real and no longer false. But, I really try harder than most not allow anxiety to get the best of me... sometimes I win, sometimes not. So, we were going to take this flight even if meant I was going to die on that plane! After all, would it be so bad to die on a private jet?! Makes for a good ending at least.
Needless to say... IT WAS AMAZING!!! Once we boarded, all anxiety just literally exited my body and stayed in Houston for the day. I felt so relaxed because it was more spacious than commercial airlines, there were no stressful directions to follow, no worrying remarks, no overhead announcements in static, no tray-tables to put up or seat backs to check- Just a very friendly attendant who made us feel so welcomed! We were given breakfast and shown the features on the plane. I was able to just lay back, put my feet up and gaze out the large window and the gorgeous sky, which is one of my favorite views. It was the most memorable experience. I am SO, SO, SOOOO grateful for Corporate Angel Network and the companies, organizations and private jet owners who work with them because this flight made a BIG difference during a stressful trip... even if it was the return flight after good news. It's still a part of the overall stressful trip.
I'm home now... and I'm still that living, breathing, walking mess of a miracle... and I'm here to help you or anyone you know in any way that I can through sharing my story with all the crazy that comes with it. Have a very thankful, happy day today! Love to you all.
It's sometimes challenging to remember to keep it positive... especially when in scanxiety mode. This is a rough visit for me. There are numerous variables that have me overthinking everything. I am not sleeping well, I'm off-task with mundane busywork, I'm on-edge... fortunately, I have been accomplishing a great deal of actual work. Bonus! But, on the other hand, breathing is sometimes a chore I have to force myself to do lately. I do often feel like I'm the only one that goes into this mindset before scans or procedures to this extent and wonder how others handle it.
The photo above is what strength looks like. That's our youngest daughter with a broken arm... both bones broken and holding a wobbly arm. Smiling. In the hospital with no pain medication yet, not even a Tylenol. Smiling. SMILING! We can learn so much from kids if we take the time to think about it. I have an album in my phone with favorite photos... mostly so that I have them to look at while they take blood for labs during scan time. They help me remember the feelings of those moments when I see them so that I am not focused on the pain or worry of what's currently happening. This is a "strong" photo, I think.
I try to keep things positive and often feel like a complete failure. Then I feel guilty because there's always someone (if not MANY others) that have it worse than myself. Generally, my life is absolutely abundant! I have endless mounds to be thankful for, especially if we are counting laundry mounds. But does that mean that I should not be feeling any negativity at all? No. I'm human, just like everyone else on this planet. I have the same emotional ups and downs. I struggle with accepting this. I always feel so guilty, which then leads to sadness and sometimes depression. Not deep depression... just far enough to be a little more than sadness. I'm still fully functional, though not to my potential yet. That's an ongoing struggle... will I ever get there? Probably not. But I'll keep trying. Meanwhile, as of today, I have 20 days in which to accomplish any and all lifetime goals because we all know that once scans come, I'll be given information that will be one of three outcomes: an "all clear" with more time, a "you have some spots" which immediately results in scheduling me through short-term investigative procedures followed by an "all clear" with more time -or- followed by a whole new way of life... again. So... 20 days. I'm in the "get your ducks in a row" phase.
I am cleaning my house like a crazy lady, scheduling things far out in advance (which is, if you know me well, something I don't normally do), trying extremely hard to plan for ANYTHING past scan day... the list goes on and on. I'm appreciative for events that are happening BEFORE scans, like our daughter's last school party on Valentine's day. That way, I won't miss it for her. But, I do feel the pressure of that "20 days left" thought. So, I'm going to get back to getting things done because that's what makes me feel just a little better right now.
I hope your day is happy and healthy!
Today is February 27, 2017... and as I prepare and try to celebrate my 10-YEAR ANNIVERSARY of being CANCER-FREE on March 9th this year, I found this memory to be fitting. But first... Please read and join me in celebrating through helping others...
July 1, 2015. The last day of my 30’s! I always envisioned this day as the big party day! Downtown on a yacht with family and friends, on a cruise in the Caribbean somewhere with family, sipping tasty beverages with fruit and tiny umbrellas in my bikini (because of course I’m totally buff and perfectly tanned) while laying in a hammock slung between two picturesque palm trees; or perhaps cruising around Italian countryside vineyards! Well, here I am at home the night before my 40th birthday, and thankful to be here right now. Deep down, I am harboring a little unsettled feeling that I have not achieved my life goals by now, but then again, I did achieve most of them by the age of 28 and then lost it all when I was hit with cancer. I had the job, I traveled the world… I’ve been almost everywhere I have wanted to go by then so I really can’t complain. I’m very grateful for that. I’m also very thankful that I was able and willing to take those trips because at this point, it’s not an option financially and now my body is restricted physically.
So tomorrow is my birthday. It’s looking to be quite the day… Venus and Jupiter are aligned and I’ve been reading that some are calling this spectacle the Star of Bethlehem. Interesting. Equally interesting, is that there will be a full moon tomorrow night. Tomorrow may also be the day that I hear back from the oncologist’s office with the biopsy results from last week. Ugh. Biopsy results. Not quite the day I envisioned for my 40th birthday, considering I have a long running habit of celebrating birthdays in a BIG WAY!
Routine scans brought me back to Houston last week. No symptoms, nothing odd, no additional pain, no blood, no nothing… just routine. I had hesitations scheduling this nerve-wrecking appointment just before my birthday and thought about pushing it back to the week after, but it was too far out from my last scans so to Houston I went. I went through my usual routine: Labs, CT scan, lunch, clinic for results. Of course, I was the last one seen that day, which is fine since I had nowhere to be… but the anxiety of waiting for results can be quite the experience, especially if you suffer from anxiety issues to begin with. The doctor came in and the results were not pleasant. Not completely awful, but not pleasant. One spot in my right lung was enlarged. One lymph node in my right lung was enlarged. One area in the right breast showed up out of nowhere. So, in perfect poise, I accept this information- NOT. I wish that were the case, but no, I lose it- completely lose my composure… a 39 year old freak out… I’m crying, I can’t think, I start spiraling down and down and DOWN… I’m not sure but I may have even been rocking back and forth like Rainman. The wall starts going up, the alarms start going off in my head and I start having flashbacks to when I was told I had cancer the first time and to get my things in order. Automatic death sentence for me. The doctor is a Saint at this point because he is trying every tactic in the book to calm me down; poor guy never had a chance because I’m a pro at meltdowns. My mom always comes with me to these appointments, so she too gets Saint status for her efforts of empathetic love and then tough love, encouraging words and then boot camp words… she really didn’t know which tactic to take either. But God love her, I can’t imagine being the mother in this scenario… again!
The doctor then proceeds to tell me that this is most likely the kidney cancer returned and we just need to get some tissue samples to find out what it is exactly. “OH F*#k,” I think… that means surgery! Here we go back down the twisty slide to Hell! I don’t do well with “procedures.” Worse yet, my body doesn’t do well with drugs! Seriously, twilight drugs don’t work on me! Now I’m having more flashbacks of the last surgery, lung collapse, vesovagal episode (which basically means I scared myself literally to death), coded on the table- not good! Flashing red lights, more alarms, where’s that wall I could use right now to separate me from all this information!?! So, I hear that I have to have a mammogram (ok, I can handle that), and a breast ultrasound (totally fine) and a breast “ultrasound guided biopsy.” DAMMIT! Biopsy… the word I knew was coming, but really didn’t want to hear. Then, if one biopsy wasn’t enough, let’s go for two! Whoo hoo! This one’s even better! Down the throat into the lung (more flashbacks of the pain from my left lung collapsing. It’s at this point that I’m now internally having a discussion with my lungs to build up muscle and stay strong because we need to pull together and get through this and FIGHT, not FLEE this time! We can’t flee because it’s painful… so lung, you better just stay inflated, buddy… PLEASE!?!?!)... ok, so we’re going down the throat rather than through the ribs, that’s good. It was ribs last time. And our goal is to get 2 tissue samples from the lung. Alright then.
Even though the doctor is telling me that it’s ok and that whatever it is, we can manage it, I’m completely doubting him! Why am I doubting him as if I know anything about this cancer stuff??? Worse, I’m in total disbelief because I have been cured by Jesus himself and this doctor MUST be wrong. Wow, was I out of my element! It’s not my plan and I so totally wanted it to be right then and there. Doubt now comes into play in a variety of ways. The kind of doubt that I struggle with even today as I await those results from the biopsy. The kind of doubt that I should not have and try to “give it to God” each and every day. The kind of doubt that makes me feel guilty for having and so I ask God for forgiveness for having said doubt, yet, I’m still hanging onto it like a child with a blanky. The fact that I am now facing the possibility of a cancer recurrence has brought up the idea that perhaps my curing experience through Jesus was really just a dream. And, if that is the case, then how do I know what has been real and what has been in my head all along? Jesus cured me. I so want to believe that and now perhaps I’m failing to believe because of this setback. Is that the case? No. I believe. I believe wholeheartedly that Jesus cured me.
He gave me the message clear as daylight “You will never again need to worry about having cancer.” Yet here I am, worrying about it.
I went in for those scans and got that news on Tuesday and the next day, I met with the Pulmonologist. We set up the Bronchoscopy for Friday morning. Thursday, I went in for the mammogram and breast ultrasound. The large area in the scan was nothing, but they did find a “complicated cyst” that needs a biopsy. So, that needs to happen. Since they couldn’t schedule me in Houston until the following week, I decided to send the report home and have that done up North. Miracle number one so far… large area: nothing. Complicated cyst… they said normally they wouldn’t even biopsy it but because of my history, they recommend it. A shred of hope that it’s nothing!
My dad and brother came down to Houston per my request (mostly because I was so afraid of what would happen during this procedure that I wanted them to be with my mom so she wouldn’t be alone). OK, so Friday, per the doctor’s suggestion, I ingested my prescribed 2mg of Xanax before I left the hotel room for the “procedure.” (That’s another word I don’t like.) When they took me in the room, my brother came with to calm me down while they gave me my IV and drugs to sedate me (remember, the drugs I told him don’t work on me). The nurse was kind enough to give me a little injection of something that was to calm me a little more as well as settle my upset stomach. Oh, I’m not an easy patient. I know this. And these caring individuals are amazing! Just amazing! Well, I’m still nervous… My veins decided to flatten out suddenly that day (thanks, guys, I thought we had a pep talk last night together… we are on the same team, so let’s be strong and get through this- mind, body and spirit working together in harmony, let’s do this!) so after a few sticks of the needle, and half my hand bruised, the nurse gets my IV in… and gives me the usual dose of twilight drug. I get a little woozy, feel a little better, but still am very coherent and obviously very nervous. I put on classical music in my ears and tried to relax… but then started getting a little jittery. So, they gave me more. All the while, my brother was holding my hand and telling me it would be ok and that everything looks good… just relax and sleep. They put on a mask to give me something to numb my mouth and throat and here’s where the comedy sets in for everyone but me. NOW, I’m REALLY drugged, they ended up giving me 4x’s the regular dose on top of everything else I already had in me… and here I was, still trying to verbally communicate now with a numb mouth and throat. What I thought was coming out all fine and normal was only coming out a sloppy gibberish apparently. I was asking a lot of important questions and getting no answers but a lot of little smiles and chuckles from my brother, which only confused me. Eventually, he disappeared when I opened my eyes one time so I figured we were ready to go, but there I was, still chatting it up and wondering why I was still awake. The doctor injected something horribly painful in my throat to numb my throat more… OMG! I yelled, cried and pushed his hand out of the way then started worrying that they were going to strap me down and all I could picture in my head was scenes from the movies “Clockwork Orange” and “Fire in the Sky.” So now I’m crying and freaking out… and so it stops for the moment. I rest.
The anesthesiologist came in and had me sign some papers after they waited to let some of the other drugs wear off a bit and counteracted them with additional drugs. I can hear a little disagreement about when my pants were supposed to come off, so I checked to see if they were still on… yep. Still there. I guess I was entertaining just about everyone in that room by now after all the drugs and numbing agents. Still somewhat coherent to talk, but not really… I’m still thinking I’m talking and it’s coming out perfectly. So, the nurse asked me to please remove my pants and I automatically go into freak-out mode! “Just in case you need to shock me?” I fearfully questioned. The room goes into hysterics… except one person who yelled out as if I were deaf, not drugged and numbed, “NO! THE PADDLES! JUST IN CASE WE NEED TO USE THE PADDLES ON YOU!” So naturally, I reply with bulging eyes, “YEAH! That’s what I said! Are you afraid that my heart will stop from all these drugs!?!” Everyone there is just laughing and I’m not getting it at this point. Finally, the anesthesiologist looks at me and says, “we won’t need them… everything will be ok.” Sigh of relief. Somehow, when someone touches my hand or arm, looks me in the eyes and states that everything will be ok, It REALLY makes me feel better inside. That reassurance that I’m ok is needed. I don’t know why, but it just helps. And, I so very much appreciate every single person that has done this for me… and for everyone else out there too. And I’m out.
They took 8 tissue samples from my lung. All went well… very well, actually. The Pathologist was in the room analyzing the samples to make sure they got the right cells… and they did. But, nothing short of a miracle, in this preliminary glance at the cells, there were no cancer cells found! MIRACLE number two! They also said that the spot that showed growth was just a blood vessel. MIRACLE number three! We did not actually anticipate this good news. We thought we would be confirming kidney cancer. Somewhere deep down inside though, I was expecting no cancer. After all, I had been cured and the doctor could be wrong. My doctor stated “most likely” it is cancer. (Now flip to the movie “Dumb and Dumber.”) “So you’re saying there’s a chance.” Yep… one little shred of HOPE to bank on.
Having that hope, I meditated the night before while trying to fall asleep. I did all my breathing techniques, I prayed for a very long time… not only to God and Jesus, but my friend, whom I was missing so much that week, who passed away from the same cancer just this past October. This was the one time I REALLY needed her here and it was already a tough visit to start with. I prayed long and hard that night for that little shred of hope. I reimagined my experience with Jesus and felt that rush of energy emanate through my body while I focused on targeting my right lung with that curing energy. I located the memory and belief of our bodies having everything we need to heal ourselves and I was on a mental mission that night to heal quickly so that when they pull those samples out, they won’t find cancer because I will have gotten rid of it already with the help of Jesus. I am cured. I am healthy. I am happy and I am thankful.
So here I am, now 30 minutes left of being 39 years old… sitting alone in front of my computer writing this story. I am SO glad I am home with my family. My peaceful husband sleeping in the bed next to my desk, our three daughters tucked into their comfy beds, our four dogs sleeping wherever they are… and right now, even though I’m not on a beach somewhere in the Caribbean or enjoying a wine flight in Tuscany, I’m perfectly content and deeply satisfied to be exactly where I am right now. I’m still nervous about tomorrow, wondering if I will get the call telling me I do or do not have cancer in the lung, but it is what it is and I will do everything I can to celebrate my 40th birthday and put that anxiety away for a day. We’ll see. But along with the planetary alignment, the full moon and the plethora of rainbows that I have seen since my scans… today, I was given so many blunt signs to let it go. I was searching online for a birthday cake idea with one of our daughters. In our search, we saw a LOT of rainbow themed cakes, which I thought nothing of it really since there are a lot of rainbow themed cakes out there and it’s not anything unique or new… but then I came across a cupcake with a rainbow that just simply caught my eye and the text under it caught my eye even more “The Amanda Cupcake” it said. “OK. I get it, God. THANK YOU!” I mentally sent up to Him. And I took a deep breath to calm myself a little. Later that day, my husband was flipping through Facebook and said, “Check this out!” It was two photos of the aftermath of the tornado that recently hit Oklahoma. One photo was the top of a telephone pole that had been ripped apart and now was simply a Cross hanging alone in the lines above a road. The other was a photo of the clouds that looked to be a large hand, as if He was saying, “Jesus is here and all is in My hands, so let it go… we are here.” All these signs.
Of course, being the over analytical freak of nature that I am, I have to admit, I wasn’t quick to jump to ease and contentment. I started thinking that my test results could still come back showing cancer… and perhaps He is telling me that it will be ok if they do, but then why did Jesus say he cured me and that I would never have to worry about cancer again? All I know is this… When that phone call does come, and after I get through this breast biopsy next week, I will be on a new path.
I didn’t get to choose which way to go at this fork in the road, but one way or another, I’ll move forward.
As of now, I’m still holding on to that experience with Jesus and the rush of healing energy I feel when I focus on that experience. I’m holding on to that little shred of hope and possibility that there is no cancer in my body. At this moment, 11:45pm on July 1, 2015… the last few moments of being 39… I can officially say that I will have gotten through the rest of my thirties “CANCER FREE!” And, I will keep hope and faith that I will start and end my 40’s cancer free as well.
Fast forward to today's date... I went through a summer of biopsies that year... all NED! (No Evidence of Disease) And now, I'm ready to celebrate that 10 year anniversary... a gift of life I never anticipated having.
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.