The general idea is known widely: some people just have a higher risk of getting sick. Those people are those with underlying health issues, those with compromised immune systems and those of certain age groups. But, what is not known widely are the affects those of us have who are a higher risk. It doesn't just equate to an extended time period for having to deal with symptoms of whatever cold or flu we manage to brush by and pick up. It also doesn't mean a simple vacation to the hospital for a few days to lay in a bed, having food served to you and nurses take care of you while you leisurely watch TV and rest. NO! It is NOT like that, healthy people.
Let me tell you first hand what this COVID-19 virus means to me at the present time.
It means worry- another germ to have to fight while I'm wanting my body to make sure those lung nodules don't grow. I need my good cells focused right now.
It means higher anxiety and panic- because if I end up with this, I'll end up with more tests... which ultimately comes with pain... and thus possibly more trauma. Anesthesia does not work on me like most, I wake up during surgeries and remember things. I am diagnosed PTSD and for good reason, so procedures scare me, to put it lightly. That's not the only thing to be anxious about- anxiety and panic about the possibility of cancer coming back because my immune system is hit already. Can it fight off more than one thing at a time? Or three? Or four!?!
It means a simple cold or flu could result in an ER visit. That then will expose myself to additional unnecessary potential health threats.
It means that if I have any new symptom, they'll test for EVERYTHING because of my medical history.
It means guilt- feeling bad for my family who I can't do fun things at home with because I have stronger symptoms that last longer than the average person.
It means depression- self-loathing and pity coming in and out every day.
It means frustration- because I want to be healthy and do not feel I am.
It means confusion and put-downs- is it all in my head like people say it is? Am I a hypochondriac? (The answer to those are NO- if you are immunosuppressed... your concerns are ALL VALID! So, stay strong in the mind!)
Healthy people get the symptoms and can care for themselves at home. But someone like me... we go to the ER - per doctor's orders.
Yesterday, I awoke with excruciating pain moving around right lung area on the back side. It shot through my chest into the front (lower than my heart so I wasn't too worried about it being that). I felt pain straight up through my neck and into my head. I was not able to take in a full breath. It was this pain that woke me up. I had my husband try to massage those areas in hopes it was muscular to no avail. I was nearly in tears; the pain was so agonizing. Of course, since I suffer from anxiety and panic, I ended up taking my panic medication right away. I did stretches and meditated. I went through all my breathing techniques... this over the course of an hour and with no relief.
Let's go to the beginning of my symptoms. It's February 1st... COVID stories are just beginning. In the couple weeks prior, I was exposed to others who were sick with fevers who did not get professional care but continued to work over the last couple of weeks because those individuals generally do not need a doctor for a cold or flu. COVID was not a big concern in the US at this point. I am now showing the first symptoms of being sick. I quickly lose out on 2 weeks of work (aka pay) because I am so sick. I visit my primary care physician and an urgent care doctor because any sign of respiratory illness can be serious for me and pretty much automatically means x-rays and bloodwork. I get a prescription for an antibiotic among other things like nasal sprays, allergy meds, and then a couple other things. I rest. Housework piles up. Work people start wondering how long it will be before I can get back to my duties because it's taking a toll on others. Our trip (my husband and I) to Phoenix is canceled for the time being. My psychologist appointments and my physical therapy appointments are canceled as well.
It's February 14th. We didn't get to celebrate Valentine's Day on the day because I was so sick. The whole family understands, but I feel guilty and frustrated that I'm not better at this point, though I can feel my body fighting and recovering a tiny bit each day. I'm physically and mentally spent at this point.
By Monday, February 17th, we decide I'm well enough to take that trip and I am now at least able to designate a few hours each day on the computer a day for work. That can be done at my parents' out in Phoenix. So, we book our flights for Wednesday and head to the airport then. We've had no known exposure to COVID at this time.
We are in Phoenix now... and I'm finally feeling like the sun is giving my body some extra strength it so very much needs to finally kick this cold out! On the third day, I wake up to a completely different feeling though. My chest is tight- very tight. I can breathe, but I'm worried about not having my inhaler with me. I don't usually need one other than when I am attacked by a germ of any kind because inevitably, it always ends up in my chest. I can't find a doctor who will prescribe one over the phone for me on a weekend, so I get the OTC version, which is ABSOLUTELY DISGUSTING to taste! It helps a little. I'm now worried about our return flight because I'm clearly not better and today obviously getting much, much worse; but, I need to get home. When I was a child, if I flew when congested, it would always end up with ear pain often requiring medical attention. My mom used to give me a decongestant before every flight, which was smart and actually did help prevent that ear pressure. Now that I'm in my 40's, I am managing high blood pressure and am not able to take those decongestants safely under any circumstance. So, I call my physician to see if this one time it may be ok. No. No and just in case I didn't get it the first two times: NO! Alright then... now what? I can only pray for the best as I board the flight home on February 23rd.
OMG... the pain in my ear is one I've never felt before during the landing of that flight into Chicago. I really didn't know what was going to happen during the whole ordeal, but of course, my worst case scenario pictured my head popping inside and blood shooting out of my ears. (That didn't happen, thankfully.) I get off the plan in panic because I literally have no hearing in my left ear. We drive straight to an urgent care where I'm given a different antihistamine, another antibiotic and I get my inhaler refilled. The next day I can hear, but it's still painful and crackly. This will continue even to today.
Over the next two weeks, I am coughing in fits so hard that I wonder if I can get enough air at times, my throat is raw, I can't sleep, my family can't sleep, I'm wounded from coughing and my prosthetic hip area is achy. I'm not sure how I'm going to get through this at all seeing no light at the end of this tunnel. I end up seeing my primary physician again, and visiting two more urgent care doctors throughout all this. All say the same thing... "if you're not getting better in a few days, I want you back in." (Healthy people... you likely don't hear that every time you're in the doctor's office.) I have extra visits, which makes me a bit more concerned that the doctors are concerned but also makes me wonder if I'm overreacting and they're just trying to keep me calm and validated. I end up on a third round of antibiotics with a new doctor while my PCP was out of town. Now I am given a NEW concern "I'm going to give you this antibiotic in hopes we can get that ear to clear up but I'm concerned about your gut bacteria being on antibiotics so long. You could get C-Diff. So, I want you on a specific pro-biotic for at least 2 months." For those of you unfamiliar, C-Diff can be deadly if not taken care of quickly. So I got that to worry about now on top of everything else. Of course, I go home and immediately google symptoms of C-diff so I can watch for those.
About 5 days into the antibiotic, I start to have symptoms of C-Diff, which are basically symptoms of EVERYTHING, so literally it could be something small and unimportant; but I stop taking the antibiotic anyway just in case. It didn't seem to be helping anything anyway. My symptoms are all still about the same at this point.
Now it's March 18th and I'm still coughing, I still have fevers on and off, I'm still achy, I have bowel issues, my ears are crackly and I'm still experiencing sinus pressure. I'm now overly concerned that my body isn't fighting this off... whatever this is and if it can't fight THIS then can it keep those lung nodules from growing!? That's the thought of a cancer fighter/survivor when we get sick! I am unintentionally put down by friends and family trying to make me think positively and feel better about, but it just makes me feel like it's all in my head and that I'm being overdramatic. Now I feel alone, sad, defeated. I call my primary physician because she said to me on the last visit that If I'm not better in a week, she will call in an anti-inflammatory for me, but given the current COVID status by the time this day arrives, she instead directs me to the ER. I don't go because I don't think I should go and risk more infection when I'm not feeling horrible enough to make a trip to the ER. So, I instead speak with my oncologist's nurses for a second opinion. They inform me that they think I should be COVID tested and they have a hotline for all of my doctor's patients for screening. I call. I'm screened for about 45 minutes over the phone and placed in the yellow risk category teetering between yellow and red. Green is low-risk, yellow is medium and red is high. They tell me my appointment for testing is set for tomorrow at 11:50am at the drive-through tent at University of Chicago. The nurses made it clear to me that if ANYTHING changes between now and the time of my appointment to head straight to the ER. I thought, that's only hours away... this is not something I worried about AT ALL and just plan to be tested in the morning.
This brings us to March 19th, the day I wake up and can't breathe fully. Great! Something changed! A new symptom! Of course this is happening to me. So, after all the things I did, my husband and I get in the Jeep and head to Chicago for testing. I make an agreement with myself that if I can get myself feeling just a little better before we end the COVID test, I won't go to ER; but if I'm still in on the same pain level, I'll just hop over to the UC ER, which is what ended up happening.
We drove up to the test site and were stopped by officers blocking the street. We had to keep our windows up and communicate through the glass. He let us through and we pulled up to the first tent where I had my license in the dash. The woman in full garb held up a sign from a distance stating to keep the window up until told to roll it down. She took my info and directed us to the next tent which was drive through. We entered the tent and when it was time, I rolled the window down to communicate with head nods only then they swabbed one nostril (and possibly my brain) and we were done.
Now I get to show you FIRST HAND what it means for people who are a higher risk to be exposed to something that is not such a big deal. This is why social distancing for COVID-19 is so important... and it's important for EVERYONE to isolate. You could be an unknown carrier who passes it to someone who then carries it to someone else who has a family member or friend who is immunosuppressed, or a red risk!
There's a small line at the door to the ER. They are making EVERYONE wear a mask and they are geared up, screening each individual before even walking into the lobby. Of all the people wanting in, I was the only one not sent away and was taken back instead. Why? Because of my medical history. My husband wasn't even allowed to come with me... nor was he allowed to wait in the lobby! He had to sit in the car in the parking garage the entire time! He wasn't even allowed to pass on a phone charger to me mid-day.
They took me straight into isolation in a COVID-designated room. They took vitals and over the course of 10 hours, I went through more than what most healthy people go through. My left hand gained an attachment in the form of an IV. That went smoothly, but hurt more than usual. My veins gave up some red blood cells to fill multiple tubes for lab testing. Then the x-ray tech came in to check for pneumonia, pleurisy and/or a collapsed lung because I have experienced all of those in the past which makes me more susceptible to them now. My body was attacked by small, gooey stickers for a quick EKG. These are all things I'm generally advised/required to undergo whenever I enter an ER or physician's office for anything more than a small sniffle because of my history. None of them are really that bad... just time consuming and a little worrisome considering there must be a reason for that protocol.
Then comes the CT. Now, CT'S are easy, but the contrast requires an IV. Good news! I already have an IV in, but this particular IV needs a PICC line that goes in the arm above the elbow. MOTHER TRUCKER! SERIOUSLY!?!? I have super deep veins that I'm sure practice dodgeball in their down time. I know this process and now I'm not so calm. (Not so calm is a HUGE understatement.)
Nurse one comes in, stabs me twice. Gets another nurse.
Nurse two comes in, stabs me twice. Gets the doctor.
Doctor comes in with an ultrasound machine, finds the spot... takes a full 10 minutes (not without tears and tension in my face) and about 9 stabs with internal digging as if there's a very delicate archaeological dig going on here. Gets a line in and says "I got it, but it's not long enough for your deep veins, so I have to pull it and get a longer one." DOG GAMMIT! I asked to please take a break, which he agreed to. He finally gets it in and I am crying with the tension in my face so as not to disturb the PICC process. It's so painful. Even to move my fingers it's painful.
I rest while I wait for the CT, but my arm is on the rail of the bed because the PICC line is on the inside of my arm and is too sore already to touch anything including my own body. Now my hand is cold from hanging out there so I wrap it up in my sweatshirt because I have no blankets at this point. Eventually, I get the blankets. Two and a half hours go by before that CT happens.
Healthy people don't worry much about CT's. They're quick and painless usually. I'm used to receiving contrast for CT's, but this one is a little different. They're looking for blood clots. I'm always cautious to remind the techs that I only have one kidney. People with one kidney either need a different type of contrast or a lower dose. Also, my creatinine need to be checked prior to injection. I get the scan and am rolled back into my isolation room.
Good news... everything looks mostly normal. I ask the doctor (one of three I saw that day) what could be causing this pain then. He said that likely it's pain from my kidney working overtime fighting whatever this germ is, but that the good news is that we have now ruled out all the big stuff. It's important for me now to make sure I'm home and resting until I am FULLY recovered so that my kidney can catch a break and my body can heal. I get a couple morphine pushes for the road, a bag of fluids, a lidocaine patch and a few prescriptions.
Please... do your part. Stay home- that means don't go ANYWHERE so that together we can clear this thing out and get back to allowing us warriors to worry only about the big stuff we already have on our plates.
I do not yet have COVID results yet, but I am anticipating it being negative.
...AND I want to put a HUGE shoutout to all the workers at UC... I was treated with such kindness, positivity and care! Please pray for their health and well-being because that was a phenomenal group dealing with more than they ever anticipated they would... with more to come. I wish they had better protection for themselves because those thin layers or paper gowns don't seem like enough.
THANK YOU, staff at UC! You made a terrifying visit so comfortable for me!!! ❤️
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!
42. My current age.
That just doesn't seem right. I think I'm going through another one of those "I'm still alive. Maybe I should get my life together and plan for more years" phases. Time sure does tick away.
The other day I mentioned I was set up to visit a new primary care physician. This has really been a process for someone like myself. Sometimes I'm convinced it's a miracle I function at all. I was worried about my blood pressure and wanting to join a fitness center that requires blood pressure to be within a certain range in order to join so I had no choice but to find a doctor. Well, I did have a choice: A. Find a doctor, get a note, join the fitness center, eat healthy again, lose weight, find balance and feel less anxious while becoming healthier.
- OR -
B. Forget the whole plan and stay on a path of depression, anxiety and illness.
I deserve an award for choosing "A."
I felt like a doomsday prepper the day of the appointment. I took beet juice a couple days before, started eating bananas again, drank lots of water, cut out coffee. I REALLY love coffee (even decaf).
The morning of the appointment I didn't want to skew the results, so I only drank water, refrained from having that cup of coffee (or three or four), and I did NOT eat the beets and bananas. I did, however, look up an essential oil rollerball recipe (which I'm not sure did anything; I was missing an ingredient). You must know that since cancer, doctor appointments have never been easy for me... so much so that I will simply not go unless someone forces me and nearly drags me out the door (even at age 42). If I'm sick and know I need a prescription, I still won't go unless my husband is available to go with and it's usually in the late evening to urgent care when I can get in immediately- there's less people and it's calm. I've managed to find all the weird ways to avoid triggers for anxiety. I'm in possession of numerous home remedy books and have high speed internet for more. So a doctor is a last resort for me most of the time.
I went to see this new doctor and felt the need to say affirmations on the way. Thankfully, this place is merely minutes from my home. I had no idea what the inside looked like or what the feel of the environment would be. That's a big thing for me. Environment is everything! I did pre-evaluate the exterior of the building before making the decision to book an appointment. Along with affirmations, naturally, I went over every possible scenario of the upcoming visit which included the most likely scenario of it being a regular appointment: a discussion, a plan moving forward then I would go about my day. Other scenarios included (and if you have anxiety about seeing doctors, I'm sure you've already thought of them all here):
1. Blood pressure medication: the side effects of them. Doesn't blood pressure mean it deals with the heart so medication would be heart related. I'm not so comfortable with screwing around with my heart, I'm already down a kidney and part of a leg here... and half a thymus since we're counting. But my heart... that's gotta just be left alone. I'll talk to my heart and we'll figure this out. Then I went into rationale mode: don't be stupid, it's no different than getting an antibiotic for a bacteria or a prescription for anxiety. I know a ton of people on BP medication. Not a big deal. OK. Fine, if she puts me on BP medication then so be it. We'll just get it under control and move on with our LIVING. I'll need to change my eating habits, but I want to do that anyway.
2. I make it past the vitals with the nurse and get into the exam room where I have a sudden panic attack and have to leave? I sometimes need the door open just to know my escape routes. This is crazy. I'm not doing this today. But I know it could happen.
(Insert affirmations between scenarios of absurdity.)
3. What if I don't get to the exam room at all? What if I get in there and my blood pressure is so high that they decide to call an ambulance and send me to the hospital. (This is where all the other scenarios come in to play... I'll just let you in on the worst case one or this entry will take weeks to write.) Here's how this scenario plays out... I walk in, the environment is tight and dark, the front desk greeters are cold and careless, they check me in. I sit down to fill out the 10 pages of medical history that I have PTSD about and never know if I will go into a panic attack when I have to relive it in my mind. Then, as I'm hyperventilating in the waiting room trying to fill out the hard stuff and work through anxiety and flashbacks, the nurse will call me in for vitals at the height of it all. My blood pressure will be so high that she takes it again and again just to make sure then leaves the room, calls the doctor and an ambulance and a team comes in the room to have me lay down and breathe. They hook me up to oxygen or something and some monitors and explain to me that I need to go to the hospital. They ask if there's someone they can call to meet me there. I skip the ambulance ride in my mind because at this point I can't even imagine it and go straight to the intensive care unit (the one where my lung collapsed, of course) and now my brain sounds the fight or flight alarm and my body decides to have another vasovagal episode and I code. Death.
All my worst case scenarios end in death. It's like the seven degrees of Kevin Bacon but it's the Mandyland medical version.
Here's how it really went:
I walked into the very well, naturally lit waiting room with floor to ceiling glass windows. I went straight up to the counter and was greeting by a very friendly, smiling individual who spoke kindly and softly. She had all my insurance information already in the system because, unbeknownst to me, they are affiliated with the hospital where I had my lumpectomy. They had SOME of my medical records already. She gave me three forms to fill out- standard forms. I sat down. I wrote my name and birthday and was called back by the nurse. I will admit that because it was so swift, I did feel rushed and nerves crept up a little, but likely much less than if I had more time in the waiting room. I knew the blood pressure was coming. Two nurses guided me to the room where the standard questions and vitals happened. I didn't have to fill out the forms at all!!! One nurse walked me through it very quickly and typed everything in for me... which by the way, was a HUGE blessing! It prevented me from having flashbacks because I didn't have to write it, it didn't drag on and I had no time between one memory to the next to dwell.
Vitals: I notified the nurse that I have anxiety and told her all about every one of my concerns, especially the one about ending up in the hospital today. I asked her to please just tell me I was going to be ok even if it was high because I'll freak out if she shows concern. BP was high. Twice. She made my laugh. I asked what my BP reading was and she paused and said "you're ok." with a little smirk. I laughed because I knew she was just pleasing me at this point. My eyes popped out of my head and I said, "it was high, wasn't it?!" I asked if she was going to send me to the hospital... she said no, so then I breathed again. Good... hard part done.
The doctor came in right away and was very pleasant, calm and seemed to actually care. She did NOT have a white coat on, thankfully. I don't know if she did that just for me or if she normally does not wear one but it worked. I appreciated it immensely! She was dressed so beautifully that I had something else to focus on other than the doctor's office and being stuck in that little room... her fashion sense. It was so nice to feel like that in a doctor's office. We discussed the basics and have a plan which doesn't even include BP medication because when she took it at the end of the appointment it was completely normal! Go figure.
All done... like a child getting immunizations, honestly. 42.
I headed to the fitness center to join. There were some miscommunications about BP requirements which set me into more anxiety, but it was resolved. I'm looking forward to them calling me for our initial orientation and program assessments so we can start exercising there soon.
This day... it was a day to celebrate. It may seem a bit ridiculous to some that a simple doctor's appointment would cause so much turmoil and stress, but I know I'm not the only one who has this issue. My history will never be erased and I try to manage it every single day.
I saw a meme the other day that read "gain in your 20's, build in your 30's, chill in your 40's." It made me depressed. I did gain in my 20's, then became ill and lost in my 30's, now I'm back to planning (I think that's probably what would have been written for "teens.") in my 40's. So far behind! But, I do enjoy life and hope that I can continue on the path moving forward even if only one baby step at a time.
Each accomplishment is one push further from anxiety.
Life in short increments. (One more month to live before life completely changes or I get extra time again.) That's where my mind has decided to settle upon once again. It's about one month before my next big scan date and anxiety has begun committee meetings inside of me like a little band of rioters collecting members while creeping around my thoughts. I've been attempting to ignore this for a few days, but today that aggressive little group grew quite a bit bigger, merged with the depression society and found another group: the "F* it" group. Those organizations don't really get along... when you have a "F* it" gang fighting an anxiety and depression troop, it's almost like you have an internal war of feelings happening all at once.
So, we all know what the anxiety group is like... even if you do not experience true anxiety on a personal level, chances are that you know SOMEONE who does or at least you know a little about it. But do you know about the "F* it" group of feelings? The easiest way to describe this would be to compare it to the show "The Big C." The part where the main character goes through this "F* it" phase and does crazy sh*t she would otherwise not do had she not been given a cancer diagnosis. Before this show came out, I didn't even want to see previews of it because I couldn't handle the PTSD flashbacks from all the triggers. After the first season was over, I forced myself to watch it... it was pretty similar to my "F* it" phase. Oh yeah, I had one. It was a good one too... until I realized I was still alive and might actually continue to do so... then the anxiety troop took over to calm us all down just in case we ended up living longer than expected, which is exactly what happened. If I had to choose a side, I would definitively join the "F* it" gang. It's definitely a lot more fun and manageable... but extremely risky. So, currently, I'm hoping that these two internal groups will come to a middle ground of some sort; I think that may be what most would call "normal." I'm not fully sure though, I haven't been normal in over a decade now.
Anyway... I'm going to see a NEW primary care physician in the morning. The only reason I'm doing this is because I unquestionably loathe the fat suit around my body- it's gotta go... and in order to exercise at the fitness center of which I would like to become a member, I'm required to prove my blood pressure is within a certain range or get a doctor's release. I'm not even sure this NEW doctor will give me a release considering this is an initial visit and she has no history with me. I'm quite bitter that I have to see a regular doctor... I'm still completely perplexed on the rationale or lack-thereof which prohibits Naturopathic Doctors from being primary care physicians. I miss my ND in California. I resent that I have to live in the dark ages (or what seems to be the dark ages we call the Midwest after having such an abundance of access to a variety of health options out west). BUT... I want to be very clear on something... I would live ANYWHERE for the family I have!!! I am completely in love with my husband an children and would do ANYTHING for each and every one of them! In addition to that, I am SO BLESSED to live in the neighborhood we settled in, we have THE best, friendliest, almost family-like neighbors and I wouldn't give them up for the world!!! And I genuinely mean that with all my heart. In any case... my current focus is to get this body moving again so I can feel better about myself, and so I can say I'm healthy and actually FEEL it! How does this relate to the anxiety I'm having? Well... simply... my body likes to flip out when that BP cuff goes on. WTF?! Honestly, it's not like it hurts... what is the big deal... I talk to myself and try to calm myself down, I do breathing exercises, I started taking beet juice and diffusing oils, I stopped drinking coffee a day ago (you like that? A whole DAY ago... what an effort... makes me feel like a cheater), I started eating more bananas for the potassium and I googled how to get that bottom number lower (because everything we read on the internet is true and works 100% of the time, right? Ha ha.). Well, at least I can say that I'm going to put forth full effort. The good news is that in the two days I've been recording my blood pressure (probably too many times a day), the top number is ok). But that darn bottom number! I finally got it down to 89 tonight... so I left it at one and done considering that was an accomplishment (or luck... either way, it was good so I'm ending the day on a good note. Usually I suffer through 3-4 takes with 5-10 minutes between then average them all). I just need to be in the 80's to join that fitness center... just in case I don't get that doctor's note (which I still need anyway for history of cancer and an internal prosthetic).
Alright... so it's late, really late... and I'm sitting on the computer contemplating how I'm going to handle tomorrow. I'm going to have to try to find my last blood work up, my scan results and take a whole bunch of stuff in to fill out the thousand page intake form these facilities have now. They said to arrive 15 minutes early, which to a cancer patient usually means 30 because it takes forever to fill out surgeries and medical history. UGH. Wish me luck.
Well, I have successfully completed my first year back as a public teacher after "surviving" cancer. School is officially over for the warm months! One of my most ridiculous fears with taking a job like this lingers on my mind daily... what happens if a panic attack sets in during school hours? Thankfully, I was somehow able to strike a deal with anxiety and we've come to some compromises, but I know that this is not always possible as anxiety is often more stubborn than I (such as with airplanes now- we are still at the discussion table for this issue... back and forth with terms we go until hopefully we reach an agreement with which we can both be content). I am fortunate to occupy the given space at this school because interestingly enough, environment can often be a trigger and this is a particularly good set up for me. This past school year, my mind and body stepped up to the plate with big girl panties on and lived each day one at a time. I did NOT pass out... not once. BONUS! I did not freak out to the point of having to abandon classes mid-day as I thought was possible. I did not hyperventilate too much ("too much" being the key phrase here). I did not space-out to the point where my students thought I was having a stroke or something. I did not have a vasovagal episode during school hours, or at all in fact... BIG BONUS! My students did not ever feel the need to call the nurse or principal due to concern for my health and well-being (or if they did, I didn't know it and it never physically happened). I was able to make it through every meeting without having to get up and walk around to ground myself. I managed to function. Imagine that... just function... what a huge success that can be sometimes.
Yes, these are legitimate concerns. I 100% realize how absurd every single one of them sounds too because I didn't always have these concerns, remember. So if you happen to be laughing at the craziness here rather than relating then you do not suffer from true anxiety and/or panic attacks and therefor, please do not say you do in phrases like "I'm having a panic attack" or "I'm having anxiety." They have become very overused. If you relate to these, then you know what it feels like to worry about the simplest of things that others take for granted- or maybe it's not that they take them for granted, but rather just accomplish without thought... we call those "normal people," right? Because, for some reason, we (anxious people) have decided that we are not normal any more. But that's not really true. We ARE normal... everyone just has a different normal. Along with the term "survivor" I also do not care for the phrase "new normal." How many of you have had to face that term? How did you handle it? It didn't sit well with me and ten years later, sometimes I find myself dwelling on my old normal and missing my former life... but please don't get me wrong, that doesn't mean I do not like my current life. I am immensely appreciative for all that surrounds me and for the individuals whose paths intertwine with the one laid out for me. I have a very different life now after cancer. I don't know that I will ever fully be comfortable again as I once was, but somehow, I seem to manage to SURVIVE and live. I am aware and careful not to create too many similarities in my new life to my old life as I do not want history to repeat itself.
Getting back to summer... now that we have arrived, I know scans are coming. Thankfully, my doctor allowed me to break for 7 months this time rather than 6 so that I could celebrate our family birthdays before heading to Houston and starting the clock again. But, sadly, I was not able to stretch it to 8 months to ensure my participation in the big birthday vacation to Ireland and Scotland for my dad... which will come AFTER scans. My mom is the definition of positive thinking and freely books these trips on the assumption that all will be fine with this next set of scans. I still do not understand how she is able to do this. "WHAT IF?!" If you don't have someone in your life to pull you out of that mind-sucking leach of a "what if" state and force you to accomplish things outside of your comfort level for your own benefit, then I highly recommend finding someone because without my mother, I would be purchasing all the insurances, all the backup options, all the extras that will allow me to cancel last minute without penalties and likely spend more money on those things than if I just have to cancel when the time comes. Planning things is not easy for someone dragging panic around all the time and ironically, planning helps push panic aside.
I am looking forward to that trip and am going to focus on that!
I am looking forward to summer!
I am looking forward to celebrating our birthdays!!!
I am looking forward to each day being more "normal." (...and I hope you are too!)
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.
My parents treated us all to an absolutely amazing vacation last week to celebrate so many life events together... Me being cancer-free for 9 years this month, my dad's milestone of being cancer-free as well, my mom's birthday, my 40th birthday last year, my husband's 40th birthday last year, a brother's 40th birthday coming this year, his wife's college graduation this year, another brother's college graduation this year and his girlfriend's college graduation this year as well. We just wrapped it all into one HUGE celebratory week together in Caribbean! We sailed on Celebrity's Silhouette ship for a week to Cozumel, Jamaica, Grand Cayman and Haiti. It's nice to get away, and even nicer when you visit new beautiful places... more importantly, though, vacations like these resonate in my heart and remind me of how wonderful life really is and how thankful and grateful I am to be living it... with family.
For those of you who may be unable to travel to such places, I hope that you will enjoy seeing a few images and reading about this trip and that it brings a smile to your face and warmth to your soul.
Of course, no vacation comes without my dark but always faithful companion, anxiety. A plane ride was inevitable for this trip as I needed to get from Chicago to Fort Lauderdale in one day. I know the drive should take about two days and trust me when I say I seriously considered driving down in one long stint... by myself. The thought of being held captive in a small seat barreling through the skies with no ability to step outside to breathe fresh air and claim some space around my body if it so chooses to panic is not a happy one, to say the least. However, the thought of allowing this disorder to cripple my ability to travel the world is far scarier than that plane ride. I do everything I can think of to overcome my fairly new fear of flying. I've traveled the world my entire life and LOVED it! I've been to Italy multiple times, France, Scotland, Greece... sailed the Mediterranean... I've been around the globe all the way to Australia even! I've flown to Hawaii... twice! I've been to the Caribbean and all over the U.S. What is the problem now!?! I internally argue with myself every time I book a flight because I'm angry with myself for now having this issue to deal with and it must come from within, but it cannot win! (Though, honestly, sometimes it does.) I even go so far as to try to estimate when the busiest time at the airport will be and then hope to get a flight during a slow time. (Psycho) So, I got on that plane and kept myself occupied with music and a movie and made it down to Florida... ALIVE and able to walk off the sky bullet consciously, happily and newly excited for the cruise! Cruises, on the other hand, do not make me anxious, oddly enough. I've determined that it must be because I can walk around, I can have space around me and I can step outside and breathe if I need to. Whatever. It is what it is.
We started the vacation off with a full double rainbow over the Atlantic Ocean just off the coast while having some tasty beverages. If you've ever wondered what's at the end of a rainbow... here ya' go! Nothing but beauty and amazement. I'm sorry my camera did not capture the second arch... if you're not aware, when there is a double rainbow the second one sits above the more vivid first rainbow with colors in reverse order. When there is a triple (which I have only ever seen once), it will then reverse back again. As you know, I love rainbows. They are a sign that everything is ok. What a perfect way to begin this family vacation of celebrations!
On the most upscale, relaxing ship I've ever been on, we set sail on Sunday afternoon. I'll be honest, our first two days were rocky with high winds and our captain was hysterically funny about it during his morning announcements. Our first stop: Cozumel, Mexico. I'm not a fan of Mexico... only because my body doesn't handle it well. After living in Arizona and California and having traveled to many places in Mexico only to return with Montezuma's Revenge each and every time, I've decided that Mexico is not good for me. It's a beautiful place and has such a unique culture, but it just doesn't agree with my body. So, when we arrived, I only shopped a little for gifts for the kids. I had considered taking the long journey up to Chichen Itza or the Tulum ruins because I so very much love seeing ancient ruins and have never seen a Mayan pyramid or any pyramid for that matter. But, I was told I would not be allowed to bring my own food and beverage, so I nixed that option pretty quickly and stayed on the island. Unfortunately, my husband's dive excursion was canceled so he was stuck with me for the day. It turned out to be a warm, sunny and gorgeous day and I was happy to have him by my side as the rest of the family went on submarines or played games on the empty ship.
We were in Cozumel for the day then sailed on to Grand Cayman... I love that place. Once again, though, my husband's dive excursion was canceled. Poor guy. I had originally planned to rent a Jeep and drive my parents around the island to a beach- simply because I just wanted to drive on the right side of the car and left side of the road... in a Jeep because I love Jeeps. But, in Cayman, there is no dock and people are tendered in to port. There were 7 ships in the bay tendering at the same time and we were the last to arrive. Figures. So, we didn't get tendered in until the afternoon which meant no Jeep for me. But... if that's all I have to be bummed about right now, that's great! Fortunately, at there was no anxiety for me... though I did think about the possibility of it if I was was going to be stuffed into one of those lifeboats which they used as tenders. I was able to get a seat in front on top and outside! Score! Once again, we casually meandered around town. My husband was able to buy some of his favorite rum cakes and we bought some more souvenirs for the kids then went back to the ship. The view from the ship was stunning... each stop was more beautiful than the last.
Heading to Jamaica. I've never been to Jamaica before and haven't heard many good things about it from others, but we had a WONDERFUL time! The views were breathtaking, the beach was gorgeous, the food was great, the drinks were plenty and we were all on the same excursion this time. 40 of us loaded on to an air-conditioned bus and drove about an hour to a private beach where we each had a large, padded beach chair under palms and other trees, which surprisingly housed hundreds of very large, leggy, striped spiders! Needless to say, I was in the water nearly the entire day. And for some, that was the highlight of the day. Jamaican dancers worked their way across the beach for the guests and my husband and I had probably a little too much fun as we danced in the water behind the actual dancers. My brothers both have video of course... and likely many others do as well. You may find us on You Tube soon. LOL When we got back to the ship, we didn't realize we were suddenly famous and now known as "The Water Dancers" who provided several minutes of pure hilarity for many beach-goers that day. Another day with no anxiety. If only I could do this EVERY day.
One last stop on this trip... sadly, it's already almost over. It's so nice not worrying about anything for a week though... other than the occasional, yet scarce, anxiety tugging on me like a small child in constant need of attention. We head to Labadee, Haiti for our last land visit. Having seen the poverty in Jamaica and having been to Labadee before, I know what's coming. I like to spend my money with locals rather than corporations so when I shop abroad, I do tend to look for people on the side of the roads or in small markets who sell handmade items not found in big shops with brand names. I know Haiti has such a market, but I didn't know how big it had gotten since my last visit there. We docked! Last time it was tenders only. We talked to many of the locals who beg you to buy ANYTHING from them. They are all competing for your money... because they need it so desperately. I had saved the bulk of my cash for Haiti for this very reason and I knew I could buy some artwork from them, which is really what I love. I had tried to negotiate a price on a Oaxacan wood "animalito" in Cozumel, but wasn't able to get it where I needed it to be and so I am animalito-less. The beaches on Labadee are stunning with views of distant mountains and endless skies. We had wanted to ride the zip-line across the bay, but we didn't book it in time and missed out. (I suppose I should really try to be a better planner; I tend to let anxiety get the best of me though and prefer to play-it-by-ear so I'm not committed only to cancel if anxiety shows up that day.) So, once more and for the last time, we wandered small booth-like shops. Mark and I chose two beautiful paintings of beaches for a steal of a deal with cash to the locals and then we bought a few small items for the kids as well.
Cruising isn't really about where you go and the stops you make. It's more about the journey... such is life. I've been on a few cruises in the past and this ship was by far the best. (The worst ship was the one that sunk in the Mediterranean on the sail date immediately following ours! My mom and I wondered how that ship was floating and contemplated walking around with our life jackets on just in case... then it sank!!! Thankfully it sank AFTER we got off.) This cruise had very few children (which is nice if you're on an adult-only vacation) all of whom were so well-behaved! The food was phenomenal, the views were spectacular, the service was top-notch, the ship was gorgeous and we had such a great time!
There were two "Evening Chic" nights (formerly known as "Formal Nights") this sailing. My dad was not feeling well the first night and missed out, but then gradually came back to life and made it out for the second special evening. He is Scottish and owns his own kilt... we rented kilts for the rest of the men. I didn't take photos those nights since they had photographers all over the ship. We did buy some photos, but I have yet to scan them to post them for you. My husband is also Scottish, but has a different tartan than my dad's family... it was fun to see them all in kilts and in their appropriate colors. The ladies all wore black cocktail dresses. The food that is included with the cruise price was so delicious on this ship, but the specialty restaurants... there are no words... we had a hard time leaving those places after such decadence. How very blessed and lucky we all are to have been given this opportunity to enjoy life together for a week in such luxury. I am SO thankful. SO SO THANKFUL!
We said goodbye to our beautiful white ship, which they paint at every port, and headed straight to the airport. In usual Griswald form, I got stuck at security. TSA wouldn't allow me to go through the new scanner (even though I was TSA approved) and forced me through the metal detector, which ALWAYS alarms because of my metal hip/leg. And, as you likely know, if the metal detector goes off, they pat you down. So, I got the pat-down. Usually, this isn't an issue. This time though, they rubbed my entire body and then tested the gloves and told me that I tested positive for explosives!!! WHAT!?!?!! Of course, my dark companion showed up immediately to handle the situation for me, so I let TSA know that I have anxiety. They informed me of the process and allowed my husband to come to the little room with me. I was told that hopefully, the next rub-down will clear... according to TSA, many people test positive for explosives in this airport because of all the sun-tan products and lotions... whatever... news to me! If the second rub-down hadn't cleared (thankfully, it did), then they said they would have to question me and search my bags... then possibly DETAIN ME!?!?! And here I was, entering the airport just moments earlier with hardly any worries... relaxed, not fearing the flight and ready to go home. So much for that blissful feeling. Party's over... back to reality... BAM!
I'm home now and as I reflect on this family vacation, I can still feel the calmness and joy that sat inside me throughout the entire week. I hope I can hold onto it a long, long time. <3 It's interesting to think about how I feel when facing the possibility of having cancer and then comparing it to the feelings I have of worry when it's not about cancer. I often feel guilty. But the reality of it is that anxiety comes and goes in my life... regardless of the severity of the situation. Anxiety doesn't care as much as cancer isn't prejudiced. I was happy to have not had as much anxiety as I now "new normally" do... if only for a week.
P.S... Regarding my selfie at the top, before anyone gets the wrong idea... Yes, I'm in the car. NO, I'm not driving.
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.
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!