Sleep is elusive in my world, especially when gripped by the claws of anxiety. This morning I woke up way too early, but finally late enough to rise from the bed. Of course, not before grabbing my phone and logging into MyChart to see if the Covid results came in yet. They did not.
But, as anticipated, the results of the other tests were there BIG AND BOLD! Plain as day! The sinking feeling we get as survivors whenever a test result comes in, right?! Well... I stare at the links knowing I shouldn't even open them. I know my tests in the ER were fine because the doctors said they were and sent me home. But we survivors know... that's just on the surface, don't we?
"Seek and ye shall find."
I realize that this is not truly the meaning of that verse. I'll get to that later. It seems applicable at times though, especially as a fighter/survivor... whether it be for cancer, diabetes, alcoholism or any other struggle that we go through medically, mentally, physically.
Let's get into the present. Full disclosure today.
I'm not that OK with this, but I'm also still going to therapy and my psychologist is trying to get me to work on not avoiding. I'm not sure why because at the current moment, ignorance sure does seem much more blissful that this! I AM holding back the tears. I AM tensing my jaw. My body is slightly trembling internally and I can feel the movement deep inside. BUT... here I am, trying to keep myself exposed to my fears in hopes to get over them. Maybe it's a bit too much too fast, but (and excuse me here) FUCK... that sure does seem to be the pattern of my life! Not that I have a choice. I'm thinking, can't it just be better for me if someone just changes my password and keeps me sheltered from this shit? I would definitely be a happier person, that's for sure. What's the harm in that? We shelter our children. We tell white lies for others. Why do I have to face that information right now? What good is it actually doing me?
Now let's get to the words in that image.
I already knew I had some spots my oncologist was watching. In fact, I haven't typed an entry in this blog for quite some time (OK, fine... two whole years!) because i mastered avoidance. It's not easy for me to put my story on paper but I do it praying that someone struggling with little to no hope finds just a shred of it through my traumatic experiences and if only ONE person gains hope, then it's worth every bit of struggle on my end. So please, share my story. What I WANT to do right now is turn this story into positivity and get back to avoiding discussing that box up there. BUT! It's not going away. It won't disappear from my thoughts. So why avoid it anyway? SO THAT I DON'T HAVE TO DEAL WITH IT! Nobody wants to deal with that!
Here we go... My oncologist in Houston (as you know, passed away... from cancer- it hurts my heart). He would breeze into the room, smile and say hello to my mom, give her a big hug and basically torture me with his lack of attention knowing I'm anxious for the results; but I knew when he did that, all was ok. He would make light of situations. He knew me well enough to know that I didn't want or need medical details and that I trusted him with every ounce of my life. He would say "you're good. all clear." Then we'd small talk only for a few minutes and set up scans for six months out. That was the routine. If he was watching something inside me, he would try not to tell me, but I'd hear him sneak it to my mom on occasion or make a small comment as he talked to us and then I'd freak the F out. But he would always calm me down. The problem here is that because I tend to not remember details of health information, I don't know when these spots showed up and I'm not sure who I trust more than others with the information at this point. And you can bet that I will not be digging around in my medical files... been there, done that. NO THANKS! Never again!
I can't remember when these spots showed up in the first place. Also, could they be scar tissue from previous lung biopsies? You know... the one where they "used enough drugs to knock out a herd of horses" but I was still wide awake until they heard me scream when they put that needle down my throat. Yes, I remember that plain as day! I also remember the pain. That was when the surgeon said "OK, we are going to stop now." Then they had to reverse the drugs, wait and then finally bring in the anesthesiologist who could actually knock me out. (You can read about that experience here: http://www.tethered.life/blog/february-27th-2017.) I've been hoping these spots are scar tissues... that is, up until I GOT THIS NEWS!
That box reads that there are two new nodules!
I'm sure I'm not the only one here who goes through this process... please, if you do, let me know. So here we go again... let's RATIONALIZE:
Being realistic, my new oncologist now at University of Chicago is more honest and open with information about my health. Thankfully, he is also very calming or I may have jumped off a cliff by now. He informed me from scan one that I likely have active kidney cancer in my right lung. He also said very nonchalantly that it's really nothing to worry about because they aren't doing anything and they're lazy. (Picture my facial response here... blank stare, jaw dropped, eyebrows up, eye's popped wide open... not sure how to reply. I think I became temporarily brain dead.)
Of course, since I mentally and unintentionally completely shut down when information is given to me, the details of all this are very confusing. What isn't confusing is the text in that box above that I received today saying I have two new nodules. What now? Do I have to go back in for more scans and possibly another lung biopsy!?!? Probably... maybe not tomorrow, maybe not this year, maybe in April. I don't know! But I can tell you this much... I'll be thinking about it every single day unless I find a path to peace at this point. I don't think I need to get much into the common anxiety about all this- possible surgeries, possible chemo, life as I know it ending until I either do or do not make it through whatever is or is not coming my way all because of these spots. I'm really good at seeing worst case scenarios play out by now. I already saw myself in the mirror this morning and thought "I could potentially not make it through the rest of this year." I'm working on that. I need to plan more vacations. There are too many places in this world I have yet to visit.
The full verse is to be taken as a positive saving grace. So how do we focus on that? For me, that will mean "asking" for health and strength in the form of prayer. It will mean finding something positive to "seek" out: Health... more specifically, healthy eating to achieve overall health and starting with light exercise. I will find time to rest, cook, and breathe. I will "knock" on Jesus' door figuratively, for healing... but how? I will close my eyes and breathe in healing thoughts alongside memories of my experience with Him. I will visualize myself knocking on his door and I will focus on the well of tools He has given us all deep inside our hearts. I found it once, I need to find it again. It's not easy to keep that at our surface.
No matter what happens, I will have to go through it. I have to believe we are all part of a greater plan and keep faith in Him that he will bring us all through our paths together.
Keep up hope, keep up positivity... because the alternative is no way to walk your path.
Love and hugs to all you fighters/survivors out there. ❤️
I am always a work in progress.
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.
"When I stand before God at the end of my life, I would hope that I would have not a single bit of talent left and could say 'I used everything you gave me.'" - Erma Bombeck
I know I have mentioned before that this is my all time favorite saying. I never knew this quote before I saw it in a hospital gift shop one day. It now sits on my desk for me to see daily. My mom has always traveled to Houston with me for scan days, surgeries, and clinic visits, but this year will not be joining me. It makes me sad because we have a routine and I enjoy her company. I know it's time to move forward though and my husband is just as supportive. He has traveled with me when able in the past, though I'm not sure he knows yet that now he will be expected to every time. He will... willingly. I love him SO MUCH!
My doctor was at a different hospital when I found this small, inexpensive, creatively decorated cross with the quote in the center. I remember spotting it among so many other little trinkets in a display case. It was a crowded little boutique. But it was located in the strangest place, I thought. It was not situated in the lobby of the hospital at all. The hospital was connected to a hotel and it was just off the walkway from the hotel into the hospital. We always stopped in there. We still have the same habit today. The new hospital (well, not new, but the one I visit now) has a little gift shop on the second floor in the main area of the outpatient building where I brave through (haha... "brave" through) all my labs, scans and clinic visits. It is not as overflowing as the previous place and I haven't really found much there, but it's always nice to browse. It takes my mind off the upcoming results, even just for a few minutes.
Breaks are important.
Sometimes, more often than not, I forget this; or rather, I ignore it. Breaks are regenerative. I give everything I have when I give. I truly do. THAT I am sure of. And yet, I still seem to have so much more to give. I hope that through my posts, you are getting something positive from my experience sharing. I would love to read some of your comments and please... let me know what you need.
Thank you for being here with me.
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.
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.
(Be aware... I have posted a photo below of the staples/stitches after surgery.)
I remember seeing the Orthopedic Surgeon prior to the day of the surgery. I remember the medical campus and the building. I remember the waiting room, the large curved waiting room filled with sad, worried people... some of whom were not able to have the surgery they needed to stay alive. They didn't have the option- because of their insurance. At the time, there were only a handful of surgeons that performed this type of surgery and I was lucky one of them was so close to home... and even more lucky that I had insurance they accepted. All those people in the waiting room that were there with those bad insurance plans were there in hopes to catch the doctor on his way in or way out to beg and plead and hopefully find a way to get the help they so desperately needed. I didn't see a light at the end of their tunnel for them, so I started bringing little gifts to the waiting room. Silly little things with little notes on them just to let them know that someone cared. I passed them out in the waiting room to everyone. It was just little samples of lotion with my card and a happy note. Nothing extravagant. I think it also helped me stay busy while I waited. I find that's very important to do when facing life-threatening illnesses that you are waiting to discuss with a professional who is going to either give you good news about living or bad news about possibly not.
This is a microscopic view of the mutated cells. The enlarged circle area is a tumor that is forming. Dr. F. took the tumor from my kidney, liquidized it, ran it through a machine that separates the mutated cells from the healthy cells and then put them into petri dishes and is growing more of my tumors. Then, he puts them into smaller individual dishes and tests cures on them. He gave us a tour of his lab... pretty interesting stuff. The long squiggles are the blood vessels that the tumor is forming to search for nutrition.
When I was called in once, I only remember little pieces of this particular meeting. I remember him opening a case, similar to a metal briefcase like the mafia carry in movies when they handcuff it to their wrists, which held all the parts of what they would replace about 5" of my femur bone with and then reconstruct the hip socket. I remember looking at my mom like “I can’t handle this… this is way too much information for me.” She caught the look and said it was ok for me to not to have the details. We needed to do this and get through it and we needed to trust the doctors. Sometimes in extreme situations, it's comforting just to hear an "it's ok" from someone you trust. In this particular moment, I was mentally "checking out" very quickly... retreating to my internal self and overwhelmingly, anxiously contemplating my options, which were really either having this surgery or letting the tumor cells continue to flow and grow anywhere they please to multiply and eat me from the inside out until death. So, yeah, I chose surgery. But the rest of the meeting is not in my conscious memory. It's blocked like so many other memories.
I know I was one of the first however-many people to have this specific prosthetic and I also know that I was the youngest that this doctor had heard of. He was not able to answer many of my questions, though I'm not sure that any doctor would have been able to answer them. I was wondering how long this prosthetic would last. Would I have to have this re-done at some point? If so, what's the average life expectancy of this new body part? Because I really didn't actually want to know the answers to any of these questions, I vaguely remember his responses. I remember him saying that most people that get any prosthetic in general will need sort of a "tune-up" somewhere around 5-8 years. But, this one was a much larger one than normal and very new and durable. He said it could last 20 years or more... he just didn't know because it's too new and because most of the people that get this type of prosthetic are much older and end up "passing on" before the prosthetic wears out. OK... So, longer than 20 years then. Like let's just say 60 years. That should be ok.
March 8, 2007. This was the day after my mom's birthday... the day I checked into the hospital for the first of several operations to replace my bones with titanium and whatever else. The first surgery was to cut off the blood supply to the tumor in the femur. I was awake for this one and very nervous. I had two nurses with me at the time... one whom I call the Nazi nurse and the other who became a friend for a while until we lost touch after moving so much. Without her kindness, I do not know how I would have gotten through that operation. I don't know about you, but sometimes a simple touch, a hand hold or even just someone laying their hand on me can create such comfort... for whatever reason. She was there and noticed every single time I started to worry more than I needed to during that procedure. I can't thank her enough.... To all you nurses out there, THANK YOU for being with us when we need you most. You'll never know how much you truly make a difference. As a patient, I know I don't express my thanks when I'm in the moment, but know that I am grateful... and likely, your other patients are as well. The next day was the big event... the main surgery.
My mom had her prayer group going for me. I don’t know when they began but I do know they created a prayer shawl that I cherish to this day and keep bedside. I took that shawl in with me to surgery with the surgeon's approval (you know it's a risky procedure when the surgeon lets you take objects in with you). I asked my family, including my then atheist husband, to pray over me pre-op with the shawl over my body. The doctors said that I would need "x" units of blood during the surgery (I can’t remember the exact amount, but it was something around four units) and then possibly more after the surgery in recovery… basically I would lose a lot of blood and this was going to be a long serious surgery.
Other than the miracle of prayer, how did I get through that surgery without even one unit of blood?
I did receive some in post-op, but not any during surgery! (Thank you to those that donate blood... you have saved my life, a few times over... if you don't donate blood, please do.)
Fortunately, I did not remember any “light” experience or ANY experiences during this surgery. But, when I came out, my pain scale seriously changed!!! OMG THE PAIN! Morphine was not enough. I did want to die. I will not lie… I was in shock, depression… I just didn’t want to get through it because it hurt so badly. The morphine was making my nerves amplified and I’m pretty sure I had superpowers for feeling things more than The Princess and the Pea. The doctors left a pen under a leg, which felt like a dagger. One of my family members got that out of there right away. Then, there was a hair in a very uncomfortable spot for everyone… between my legs near the hip area! OF COURSE! Here comes the humor in all this. Now, my mom had already been through Hell with me and all this cancer crap and now I am post-op, in severe pain, on drugs, with an abductor pillow strapped between my legs and completely unable to sit up to get this hair that is stuck between my legs near my hip! My younger and brother reluctantly agrees to reach in and grab it for me and he did with one perfectly aligned reach, THANK GOD! Oh, the relief! The poor guy! I'm ever FOREVER so so SO grateful for that act of kindness! (Humbling for us all.) If you have never had morphine, you won’t understand, but if you have, I’m sure you get where I’m coming from here. Back to the pain. This surgery changed my pain scale significantly. What I originally thought was an 8, was really only a 2 at most. Now when I go into a doctor’s office and they ask me where my pain is on a scale of 1 to 10, I always ask them if they want the REAL scale of someone who’s been through Hell or the normal person scale. I’m always astonished that they always ask for the normal person scale. Why don’t they want the real scale?! Why do we have this scale if we can't be real about it??? Whatever. Fine... I almost always just say 6 unless they ask for the real scale. That way, they understand I'm in need of assistance, but it's not too horrible that I have to head to the emergency room or call an ambulance. 6 it is.
I was in the hospital for quite some time. I ended up having a third surgery (compliments of the hospital) because they sewed in the drain tube. DAMMIT! Of course they did that. I was in a teaching hospital, a university... I'm guessing they let a student stitch me up. It was no small surgery either! I don't remember how long it was, though I'm sure my family remembers. We figured this problem out when one morning two student doctors came strolling in to try to remove the drain tube. This THIS was a HORRIFYING experience and one I wish my brain would have blocked out. It's a spotty memory, but here's a few of the moments I remember:
- the jerking and jerking of the tube from the side of my hip feeling like my entire hip and groin were going to be ripped out in one strong pull leaving me like a rag doll.
- one of the doctors actually climbing onto the bed on top of me to get to the tube from another angle... unsuccessfully.
- me screaming and then literally blacking out from pain.
- my parents running in just in time to save my life from the "tweedle" doctors in training.
- the raising of my bed so that weights could be hung from the tube in hopes to pull it out slowly.
- huge x-ray/scan machines to find out why this tube was not budging.
- the realization that if those doctors had been successful in ripping that tube out of my hip, it would have ripped out a whole lot more too! Thank God they didn't get it out!
...and I remember playing cards in the room with my family. I love my family. I have THE BEST family! I hate being alone... and I was NEVER alone in the hospital because of my family.
Then I went through Occupational Therapy inpatient for a couple weeks. My family and a few friends would come visit every single day. We would play cards, watch TV, joke… it was actually pretty nice (aside from pain and worry). My favorite day was when one of my brothers had to use the toilet. The bathroom doesn’t lock in rooms like these, so he made sure to tell us all that if the nurse comes in to clean out my bedside commode, please have her come back another time as he would be in occupying the toilet of which is needed for that job. Well, she came in while he was on the toilet and in usual Griswold form, we all forgot to tell her because we were focused on our card game. It was the scream from the bathroom and the scream from the nurse as she opened that bathroom door and saw my brother that made us all remember that he was in there! Oops. At least it gave us all something to laugh about... I'm not sure that nurse will ever recover. My brother will... or has... maybe.
I remember having to wash my hair with dry shampoo and feeling so useless. I remember having to shower down the hall in a pvc/net chair, basically, get hosed down. I felt so bad for the nurse who had to do that job. I didn’t feel bad for me at that time, just her. WHAT A WONDERFUL PERSON!!! It takes a very gentle soul to go into a profession that requires that of you. I remember being so thankful for everyone on that floor who came in to help me… Being grateful and thankful even through all the pain and tears. Without every single one of these people, I would not be here today and I'm sure I would have lost all hope and desire to live.
I don’t remember all the perfect timing, but little by little, I was able to sit up. I was able to move from the bed to a chair. I was able to walk with a walker. Eventually, I went home. I needed constant assistance for months! Not days or weeks, but MONTHS! My mom and dad basically lived with us and her best friend came down to give her a break and help me. Brothers and friends came out to help in shifts. The family and friend support I received is unfathomable. I went from a walker to crutches to one crutch to a cane... all of which took about 8 months before I was walking on my own again... what a process! I did go through outpatient physical therapy, which was depressing and difficult... maybe I'll post about that later.
Overall though, GOD is good and I am so grateful.
Through this process of healing, I sadly found out that some of the friends I considered close were not friends at all while others I didn’t think cared much were there for me. True friends are hard to find so when you find one, keep close. Always count your blessings.
The pain... it never went away fully. I do not think it ever will. I always have some degree of pain in my hip area. Most of the time, it's not enough to think about; but, there are days where the pain puts me out of commission. ...like today. Weather affects it, oddly, and I didn't realize rain was in the forecast. The hardest part of dealing with the pain is the reality of knowing that I sometimes have no control over what my day ends up being like. Today, I did manage to get some errands run, but then had to head home and lay down rather than finish off my chores... hours too soon. It's frustrating and I won't lie... I do get upset and angry that I'm not physically able to do everything all the time. It takes some self conversing to get to the acceptance point and just deal with it. So today, my laundry isn't done, my kitchen isn't clean, my bedroom isn't finished being picked up and I wasn't able to sit at the computer to work. Que sera, sera. I move to affirmations and thankful thoughts... thankful to have such a home to go to when in pain, thankful for the support I have around me, thankful to have a schedule that allows flexibility... so much to be thankful for, every single day. Now I deal with the pain... it's about a 4 on the real scale (that's about a 9 on the normal person scale)... it upsets my stomach when it gets up there... So, tonight, this post is being typed from my laptop in bed now that I've rested for several hours and am able to sit up a bit.... in my roomy room with my fluffy, warm duvet and millions of pillows... my four fur-babies are scattered around the room just waiting for me to move in hopes to get some attention.
Life is good.
I have to first apologize for not blogging every single day. It's not easy for me to re-live the worst parts of my life on a daily basis and quite honestly, I procrastinate. If there is anyone out there that may look to this blog for hope or distraction or anything positive, I know I have let you down and I am sorry. Someone stepped into my art studio the other day... quite a few people do on a daily basis, and a good plenty of these people are looking for donations of some sort. I have a policy at the studio to only donate to cancer causes and visual arts, to narrow it down because we get so many requests. So, when a cancer cause is brought to me, I often end up talking about my story and my blog site. Anyway, this particular person made one simple little comment to me that made me realize how important blogging on a daily basis really is... it's for that one person that may look to my words for hope... even if it's just a tiny short little paragraph, I must post daily. I agree and my heart sunk deep and I instantly felt like a complete let-down. One of the two BIG THINGS I'm doing in my life that could resonate with someone deeply and I am failing. And for that, I AM TRULY SORRY. I promise to make a better effort to post every day. *Notice I gave myself the "out" stating that I'll make a better effort rather than actually just promising to post daily. Why would I do that?! I'll tell you why... because in all reality, when I log in to this blog site, I am forced to think about cancer. It's as simple as that.
Now on with the medical history; my last post ended with me headed into my first surgery after the resident doctor so bluntly gave my life a sentence of "6 months at best."
I'm not sure exactly at what point it happened, but I have now literally entered a state of shock. My recollection of my experiences for the next 6 months is spotty at best.
I woke up from surgery in a bed surrounded by a team of smiling doctors. Thank God for IV drugs because I absolutely needed it. I felt ok post-op, but it isn’t good when you wake up from surgery staring at a TEAM of doctors staring back at you. But we already knew this was likely, so what now? It can’t be worse, can it?
It can ALWAYS be worse. Remember that so that you make yourself feel better… it really CAN always be worse.
So, they were right. I had kidney cancer. Stage IV. There’s no stage V… stage V is death. I’m almost there. And, here I thought I was healthy for the most part with just something a little off that I was taking care of and monitoring (in my state of denial, or rather HOPE that I was the lucky one who really didn’t have a larger issue, or if I did, it wasn’t too large, just a nuisance). Stage IV… because it metastasized from my kidney to my bone through the bloodstream. There’s a lyric in a song about cancer so bad that it is in the bone… because I knew the song, I automatically connected this scenario as the worst possible place it could go. This lyric made me believe that this was the last stage of cancer and once it’s in the bone, that’s it. Game over.
It’s amazing how our surroundings can affect our well-being and frame of mind.
Sounds like the worse case scenario; but remember, it really could have been worse. It could have gone to my brain, or spine, or liver or any other vital organ. So, ok… I caught a break (pun intended). I think these thoughts as the nurse feeds me red jello and as the doctors introduce themselves as if I may one day remember any of them. Back off people… I’m drugged, I’m in shock, and I’m going to die… and I just found out. I just want to eat this tasty, sweet, red, smooth jello right now while linked up to this wonderful bag of drugs.
It almost felt like I was Dorothy looking at the Tin Man, the Lion and the Scarecrow. Each of them had their own thing to say. One doctor was very kind. I remember him saying, “I’m here to give you hope.” I also remember focusing on just trying to focus on him and make sure the jello went into my mouth. Hope? There’s hope. Where is it? He tells me I have options and I’ll be seeing him soon, but first I must recover from this biopsy and get through another surgery. Another surgery? Another doctor steps in and tells me that I have to give him my kidney. They can take it out tomorrow or wait until I heal from the surgery I am still waking up from my first surgery. A reminder… I’m on an IV drip of some very good drugs at this point. So… I rationalize the way a drugged person would: It’s late January and the Superbowl is coming up soon. It was pushed back to February this year. I’m currently in first place in my confidence pool and was hoping to have a Superbowl party this year. So, I find it perfectly acceptable, while on these amazing drugs, to ask “If you take it out tomorrow, will I be home in time to have my Superbowl party? I’m going to win my Superbowl pool this year and I want to watch the game.” I remember this line because I was so surprised to see and hear everyone laugh at me as if I had said something funny. “I’m not being funny.” I said. One doctor looked at me and tilted his head and responded, “yes, if all goes according to plan, you’ll be home. But, you’ll be resting and recovering.” So I said “ok… take it tomorrow because I don’t want to come back again.” Settles that. I think everyone should be given good drugs when making serious decisions. It really truly helped me. I'm not so sure I wouldn't have just broken down into a fit of tears fueled by fear, like I do NOW when I go for routine scans and hear that I have to have a procedure done.
Shortly after, I remember needing to urinate. They had to get staff to help me to the restroom. On the way back from the restroom, which wasn’t far from my bed, I felt very ill and asked for a pan. They brought a chair. I asked for a pan again… they gave me, ironically, a pink kidney shaped pan slightly larger than the size of my hand. What the hell is that?! Before I could even ask for a BUCKET, I threw up in the pan only to have it all splash right out of that tiny, insulting pan back into my face and down the front of me. My mom started worrying because it was red… she called the nurses all over immediately thinking it was blood coming out. Meanwhile… I’m still drugged and remember telling her that it was ok because it tasted like cherries. Best puke ever! Bonus! Here I was just enjoying the taste of my own puke while my mom was in immediate panic and It was just the jello coming back out, not blood. See? There is always something good in bad experiences.
They took my kidney out. I don’t remember how that went. I do remember something that I don’t discuss often though and it’s something I have no explanation for. I remember during the surgery seeing a light, then closing my eyes and seeing a brighter light. I opened and closed my eyes peacefully quite a few times trying to figure out what was going on, but never did. After surgery, in the hospital, the staff came into my room very early one morning when none of my family was around with a questionnaire for me to fill out and sign. My family was not there and I was still heavily drugged. I don’t remember all the questions, but I do remember them asking me if I remember anything during the surgery. I did explain to them the light experience, but that’s all. I don’t know if something happened that they didn’t tell us about or if it was standard procedure. I didn’t care. I was still in shock and now in recovery after my second surgery… before another series of surgeries to the hip/leg to come.
In retrospect… I do believe that something happened during that surgery. It was the first time I felt that “peace” feeling during a very confusing “light” experience. I cannot explain this one.
My family took me home. I don’t remember when my dad came out, but he was there. I had family visiting me a few at a time, brothers, aunts and uncles, cousins, friends… I remember only bits and pieces. I remember getting a whole living room full of flowers and thinking how well loved I was that so many people sent me something, little symbols of their love and care. And then I spiraled into the artist way of thinking… how symbolic of life that they would send flowers that DIE shortly after being sent. And I grew to resent them as much as I adored their beauty, scents and symbolism. I received a few checks to help with finances; if you don't know, cancer is VERY expensive, MONUMENTALLY expensive... if you don't have a pile of money sitting around somewhere, I highly recommend not getting it. One person sent me a gorgeous antique cross and a group of church friends made a prayer shawl for me. These two items I most adored and still do today. My parents went out and purchased a recliner for me to recover in since I was not able to lay flat in a bed. They removed my left kidney laparoscopically, thankfully, given the archaic alternative of cutting the torso almost in half to remove it! OMG, I was blessed there! Another domino saved for the moment!
I remember Sally (my dog-ter: dog-daughter) knew not to jump up onto my lap. She would sleep in bed and then in the morning would rub up against my chair to wake me and pet her to let me know she was there supporting me. I honestly believe she knew I was sick and she knew I needed her. She would lay by my chair or at my feet, but would never climb up onto me, which was unusual because she was a great hugger! So smart. I really miss her.
I remember my parents also buying a small table to work on… we didn’t have a dining table or kitchen table. We always just ate in the living room or on the back patio. So, they bought us a table… we needed it with all the guests and for them to do research. I was still recovering as they were navigating treatment options, research and medical bills. I was so blessed to not have to deal with that through this whole ordeal.
I also remember one friend who sat by my side as I had to use the toilet- for my comfort in her discomfort- I vaguely remember this, but I remember her willingness to be there for me and help me in any way I needed. Thank you, publicly unnamed friend (you know who you are)... I know that was probably the worst job to have.
I remember another friend who flew down to help while she was pregnant… to be with me… laundry, dishes, cooking… whatever. Just to be there for me. Thank you, publicly unnamed friend (you know how you are)... I know what a challenge you must have gone through leaving your family at home to help me.
I remember my mom and my brother cooking meals and doing all my chores… making me smoothies with my supplements in them so I could build my immune system back up. I can't even thank my family enough! The Hell that they've all been through with me and around me I'm sure was at a faster pace and I'm surprised they don't all have anxiety from it all.
I remember celebrating my mom’s birthday at a restaurant on the beach the day before my next surgery- the big hip surgery. I’m glad we got to celebrate HER before I went in for that next series of nightmares.
I remember being on crutches from the time we found out about the crack in the bone to... well... for a very long time after the hip/leg prosthetic was installed. My robot, superhero parts. We'll get to that in another post. For today, just remember to count your blessings, breathe in hope and happiness, and remember to be grateful because it really can actually be much worse.
Here we go with the worry today, and yesterday. I started having upper stomach cramping yesterday, which was pretty painful. Cancer patients/___________ (alternate word for survivor, which by the way, has horrible synonyms on thesaurus.com: "residue, debris, leavings, legacy, oddments, remnants..." this is not helping... "scraps, surplus, trash..." WINNER, I want to be cancer "trash!" Who is the person in charge of proofing these synonyms because we need to have a meeting... "odds and ends, orts..." THAT is IT. I'm done. Obviously there's a better word for "survivor," I've just not found it yet and this is clearly not my resource.) Anyway, if you've ever gone through cancer, it's quite possible that you have created two pain scales as I have: My "normal person" scale and my "cancer fighter" scale. It matters because when I say I have pain, an 8 on my normal person scale is really only a 2 on my cancer fighter scale. This should give you just a glimpse of what we are all capable of enduring. So, yesterday, my pain was about a 6 on the normal person scale and today it was about a 3. Either way, there's measurable pain which of course creates alarm for an anxious person. Having been through Hell and back, I prefer not to visit there again, so any warning that could tug and drag me back is not taken lightly. Of course, there's an unlimited amount of possible diagnosis options to choose from if I do a web search of my symptoms, but I refuse to do that again. DO NOT DO THAT! (There's my little word of advice for you today, if you have any shred of anxiety, and you have an ailment at all, do not research it on the internet; just go see a doctor.) I learned that lesson the hard way after I was diagnosed with cancer in the middle of my state of shock. I found ALL the worst outcome possibilities at a time when I was already facing the worst possible outcome which made all possibilities VERY POSSIBLE considering my current situation at the time. So, here I am today, still hoping that this cramping will vanish as of tomorrow, after all, it has improved. I'll give it a few days... which means I'll probably end up in urgent care on Christmas Day because I didn't want to go in at all. Only time will tell. I'm sure that my past experiences are affecting my choice to just ride it out right now, and I know they are playing a role in the worry about something that could really be nothing. Meanwhile, I try to focus on the good: my healthy family, our beautiful home, wonderful friends, supportive family and the upcoming celebration of our Savior's birth.
As a follow-up to my previous post "Feeling the good while remembering the bad," I thought I should complete the beginning story of my diagnosis. I ended the last post with "I could have cancer?"
It was on that list of possible causes for the vision problem, but they tested my blood for markers and all the tests came back negative. Denial. No way. I’m not that “one in three” that the health teacher spoke about in high school. Nope… I’m one of the other two.
So, I call my mom. That’s always the first thing I do. I call my mom. I’m more than thankful for her at this point in my life and happy that I had previously come to the realization after my teenage years that she is indeed not my enemy but quite the opposite. I’m 31 at this stage in my life. She calms me down. Helps me set up my scans and books her flight to be with me. I’m somewhat in a blur, but still functioning properly during all this. The days go by. Not one day goes by without the thought of the possibility that I may have cancer. My neighbor, whom I’m not too close with tells me that It’s in the bone and most bone tumors are benign. She’s not a doctor, nor a nurse, but I’m totally banking on her expertise in this area at this point because it’s all I have right now… “Most bone tumors are not cancerous… they are benign.” I don’t even care if this is true or not, it is for me now! I’ll take what I can get. Benign. It’s nothing.
The tumor in the femur had cracked the bone as we had found in the x-ray and MRI, so my Naturopath had sent me to another doctor for this. He put me on crutches until we could determine how bad it was and what to do with it. Meanwhile, I had a bone scan, a full body scan, and a biopsy set up.
The bone scan is easy enough to do… if you’ve never had one, you just lay on a cold table with some straps on your wrists to keep your arms at your side and a pillow under your knees. They also give you a nice warm blanket, a pillow for your head and then put a giant rubber band on your feet to keep them together. They lower a plate down to your nose and you slowly slide away from the plate. It takes about 45 minutes, unless you forget to pee prior. Then you have to re-scan. Oops, lesson learned… remove everything from your bladder and bowels prior to having bone scan. Won’t make that mistake again. I suppose that’s why they have a restroom attached to every bone scan room?
Like most people, I had to wait to hear from the doctor to get the results, which takes days. Meanwhile, I have a biopsy scheduled for the tumor in my femur. My mom and then-husband escorted me in for the biopsy. I’m fuzzy with my memories already at this point… since the words “tumor” and “cancer” came into my personal vocabulary, but I'm not completely shocked and spaced out… yet. I remember being in pre-op. I remember the nurses being so kind and gentle. I remember my mom teaching me breathing techniques because I was so nervous. I've not yet had a panic or anxiety attack at this point in my life. This was my first surgery. My grandmother had odd reactions to anesthesia I remember, so I’m a bit overly concerned. I feel like I have a lot of similarities with her, but I know I am not the same. The resident doctor walked into my curtained-off section and proceeded to look at his clipboard and told us that he had the results of my full body scan. I asked him to please wait to talk to us until after the biopsy as I just needed to breathe, pray and get through this surgery. He seemed to push the issue... so much so that my mom agreed to walk around the very thin, "not a wall" curtain thinking he must have good news because he was so insistent on giving the results to us after we asked him to wait. Paraphrasing, I hear something like this:
“We found a large mass in her left kidney. So large that it’s pushed the kidney downward to grow. We think we will likely find kidney cancer in her biopsy today in her femur. Your daughter probably has stage IV kidney cancer that has metastasized into the bone and I would suggest she get her affairs in order because at best, she has about 6 months.”
Pure Panic sets in!
Machines start beeping!
Anxiety takes over!
I’ve lost it and am now sobbing and freaking out!
My then-husband was telling the doctor to keep it quiet and trying to calm me down. My mom rushed back over to my side....
The nurses and whomever else all rushed in and immediately put me out. Or maybe I passed out, blacked out… I really don’t know. I just remember waking up post-op from there.
I do know that I will never forget the way that I found out about that second tumor and having cancer. That doctor should not be a doctor. I truly believe that this information and the way it was presented to me has a direct effect on my perception and fear of cancer today... it could be the contributing factor that triggers the panic whenever I go for scans or whenever I have a small ailment or illness. Would my life be less worrisome had I found out in a more compassionate manner?
Be kind. Be compassionate. Be empathetic.
It's the holiday season... a time to be grateful, to bask in the warmth of our hearts and share love and empathy with all those around us. It's a time of reflection and realization. I thought today might be a good time to review some of the tough stuff that I've been through- the beginning. It reminds me of what we are able to endure during the dark hours. Sometimes my walk down memory lane is not all sunshine and melted chocolate filled with strawberries and sweetness, some roads are shadowed by the old, heavy branches of dead trees and sounds of creatures that seem to haunt. These feelings often rush through my body as if they are happening all over again but then I am usually able to pull myself forward to the current moment of: BEING HEALTHY, strong and thankful. I've been through it, it's done... remember that. Let's enjoy the season with happiness and deep breaths. So here's a bit of the beginning:
This part of my life is so distant and was not all that important to me until after my diagnosis of cancer. (I say that as “my diagnosis of cancer” rather than “my cancer diagnosis” because one therapist mentioned to me not to own it, never own it… we’ll get into that later.)
I was ill with what I thought was a cold for a couple months. While completing my post-baccalaureate degree in Art Education at Arizona State University (a two-year program that I petitioned to finish in one short year), I became sick. Perhaps I pushed myself a little too far too fast, or maybe I’m just trying to find reason for this issue that seems to be the first domino in a long and winding line. Friends and family insisted I check for pneumonia. I was fatigued and had all the symptoms of just about anything you look up on the internet. I tried to explain it away because of my school schedule and workload, but I could not deny that I wasn’t recovering. So, after a few doctor appointments and rounds of antibiotics that didn’t do anything, I went in for the pneumonia x-ray. Nothing. But it had to be something because I was in pain and not myself. I was coughing and so tired all the time! Finally, an emergency room doctor one day thought to test for Valley Fever. Positive. Well, at least we know what it is now. Valley Fever comes in the form of a fungus that lives in the Southwestern United States of which only a very small portion of people are allergic. Guess who!? Yep… I’m one. There is anti-fungal medication, but it is not delivered unless absolutely necessary, and my case was considered mild so I did not need it. I was at near the middle/end of this approximate two-year health issue when I moved to Orange County, CA in 2002 after successfully completing that teaching credential program with honors. I secured a job teaching middle school art in California and was set to begin the following fall season. Very exciting! Here we go…
Orange County, CA
My health seemed mostly stable. In fact, I felt like I was in the best shape of my life when I was preparing for my first marriage in 2004. I was of sound weight, had ample energy. But, I knew something was a little off. I attributed it mostly to stress and Valley Fever. I had tested for Valley Fever at one point to see if it had run its course since I was feeling much better, but still sick often off and on. The Valley Fever was gone! YAY!!!! I get to move forward with my life and not worry about that. (This time of my life is still a distant memory. I have since pieced together the parts I personally deem important or possibly a piece of a large puzzle that I often find myself trying to put together… as if once it’s all put together, I’ll have the recipe to prevent cancer.) But then I began having vision problems. Major vision problems. The optometrist noticed some odd happenings and recommended I go to the opthamologist. The opthamologist said it looked as though I could have some detachment in the retina but he really could not say for sure and told me to watch for flashing lights, like as if the paparazzi was flashing cameras on me (right, because I know what that’s like). OK. So, then I’m referred over to a retinal specialist… and this is where the real fun with my vision begins.
Sometimes you think you’re headed in for one specific thing… other times you know you don’t know what to expect… and then there’s those times when what you’re informed of is just downright shocking and almost unbelievable. This was one of those times.
The retinal specialist, who was so very kind and extremely accommodating to my near anxiety (I say “near” because I didn’t really have anxiety issues much before cancer, but I did tend to get nervous for big appointments), that I almost felt worse for him than I did myself. Almost. He informed me that I had what was called “Pars Planitis with Macular Edema.” Basically, that is a part of my eyeball inflamed causing a fluid buildup that ultimately affected my vision and could potentially become so bad that it causes blindness. OK… I’m a visual artist. I have been an artist as long as I can remember, literally. I have built a nice resume as a professional artist and now I teach visual art to kids. My favorite part of art is color theory. SEEING COLORS!!! How do I continue to make art if I go blind? Obviously, this was a huge blow to me! A threat of going blind would be devastating for anyone, but I felt like my world would crumble because visual imagery is my LIFE! Fortunately, this is something that can be treated and managed, but with side effects. Usually it is treated with steroid injection in the eye. Let me repeat that… A NEEDLE IN THE EYE! Luckily, I got the needle just ABOVE the eye in the eye socket. Which is bad enough. Though, if that doesn’t work, the doctor will put the needle directly into the eyeball. (Think “Clockwork Orange.”) The steroid injection eventually causes cataracts in 100% of patients. So, I have that to look forward to now. And, while it isn’t all that painful when administered, it’s just absolutely grotesque (to me anyway, maybe most of you can handle watching a needle head towards your eyeball, but it’s pretty nerve-wrecking for me)… even just the thought of it is just gross. Then, shortly after the injection, the whites of the eye become bubbled out with red blood. As an artist, I began to imagine all sorts of things that could go wrong with this of course, but the worst part is when the doctor told me that I would be fine and all went well, “just watch for blood; it will be normal for the white of your eye to turn red and puff up a little as the blood enters between the layers of your eye, but if it starts oozing out, you’ll need to call me right away.” UHHHH… WHAT?!?!! Did that just happen?! Some doctor just informed me that my eye could bleed from the white part!?!?! OMG… I’m going to pass out if that happens, that’s all I could think about. Of course, every minute of the day, I was checking my eyes in the mirror. The kids at school either cringed or thought it was the coolest thing they’ve ever seen. Fortunately, that never happened to me. THANK GOD! The red bloody eye stays bloody for quite some time. It slowly fades off. Though it’s not painful, it’s not something you can just hide, especially in a middle school classroom. I was taking too many days off and ran through my sick leave quickly. So, with this last round of edema that popped up in 2006, I chose not to have the injection again and go with an oral steroid instead. (sigh of relief for me… dodged a bullet or rather, a needle in the eye.)
During this time, I had seen a few different doctors. I decided to find a Naturopathic Doctor. Given my newfound fear of doctor visits, I thought I should try the natural route. I believe in Naturopathy and I believe that our bodies have the abilities to heal themselves if properly nutritioned. I also believe that treating our bodies as a whole is more beneficial that treating a symptom, as most modern day MD’s practice. So, I started on my naturopathic journey. (More on that later.) In California, it is legal for Naturopathic Doctors to be primary care doctors and so after a few initial consultations, I found one I absolutely loved! So, while she was working on boosting my immune system with drips and supplements, I continued working out, eating healthy and trying to figure out why my vision was so bad in spurts. (Side note: We need to advocate for Naturopaths to be legal as primary care physicians in all states!)
I found that this vision problem that I was experiencing is known to be a “symptom” of something larger. Of course it is, right!?! CLINK! I’ve somehow managed to find myself in the middle of a set up domino system of bad happenings. So… what’s the list of options for horrible issues that could be causing this vision problem? Do I get to pick the least problematic? The one that is the lesser of all evils or am I going to assume it’s going to be the worst? We all assume it’s the worst, don’t we? As you can guess, the list entails just about anything and everything. I say this literally, not metaphorically. It literally could be anything because it is related to an autoimmune disorder. Of course, my brain immediately finds the worst case scenario and I start praying. Not that I never prayed before, but I think the vast majority of us tend to pray a little harder or a little more often or with a bit more spirit when we feel we are in need. And, that’s where I was at this point. COMPLETELY LOST.
So, I went through testing… several doctors, lots of blood tests. I did my own research and was actually hoping to get a body scan because I KNEW there was something wrong with me before the doctors even confirmed it. Ask my BFF… she will tell you “You kept saying you knew your body was off. You said it!” So, of course, in our lovely nation, with our “healthcare” (or lack thereof) system, I was not able to get a scan just because I wanted one because I could not afford it out of my own pocket and even if I could, I’m still not sure I could have gotten one.. So, I kept on searching.
I have a very close relationship with my mother. So, she would fly out from Chicago and take me to these doctor appointments as I grew a little more nervous each time.. I would find a doctor, go, come home with nothing new. Find another, go, come home again with nothing new. At one point, one doctor told me it was all in my head and I honestly wondered if he was right. My mom and husband kept me calm for the most part. I was also feeling good about keeping my health up with the Naturopath. Still, I knew something major was wrong. I wasn’t sure I wanted to find it but I knew I didn’t want to go blind so what choice did I have?
We always have a choice; we just don’t always see it.
My life was busy. My life was good. Overall, I had very little complaints, considering. I married in November of 2004. Thankfully, with the whites of my eyes white! Then, after selling our townhouse, we moved into our house with a yard close to the university my then husband was attending for grad school, close to my aunt and a cousin with his family… life was great. We adopted our baby-dog, Salvadora Dali (Sally for short, my mom used to call me Sally as a child and it wasn’t looking like I was going to be having children of my own at this point to pass the name down.) Sally was hands down, THE best dog ever and more like a daughter in a furry body with four legs and a tail. We had money for vacation. I was building my name as a professional artist and working as an art teacher. And, I continued to try to get my health under control. But, eventually, I was out from work so often that I started having to pay for my own substitute teacher. I was overworked and beginning to feel fatigued again. I made a difficult decision to quit my teaching job on good terms, thankfully.
I wasn’t quite sure what I was going to do for money so I set myself up with some credit cards just in case. My then (now ex-) husband wasn’t making enough to support the house we had just purchased, but I could not continue with the stress of the job I had while fighting to be healthy. I wasn’t sure this was the right decision or not and I miss teaching there very much, even to this day. It was a great staff, a wonderful school of children and supportive, friendly administration. It was not an easy decision to make, but I knew I was sick and I could not afford to keep paying for my subs… nor was it fair for the kids to have subs that often. So, I went into real estate knowing I could start fairly quickly with little investment. I did that alongside a home-based business to make a little money, but it was so very not rewarding. Now my morale was diminishing. I was a real estate agent for about a year while still going through the search for this health issue that was causing my eyes problems.
Pain in my right hip lead me to seek help from my Naturopath who was now officially my general practitioner. Now, hip pain is a common monthly occurrence for me because I’m a freak of nature. I don’t get abdominal cramps during my menstrual cycle like most people; I get hip pain instead. The kind that makes me want to lay in bed and not move any muscle from my stomach down for an entire 24 hours. Whatever. But when it didn’t go away one month, then another, my naturopath said “Let’s get a scan.” I know I had been asking for this scan but the thought of there actually being a legitimate reason to have it now scared the crap out of me. Seek and ye shall find. Maybe I should have ignored my problem so it would have gone away… that’s what I was thinking anyway.
She recommended a scan because I was currently taking that oral steroid for the vision problem. Over time, the steroid can cause something which occurs in the hip… She was looking for Avascular Necrosis. It was a longshot to have this given the short amount of time I was on the steroid. So, I wasn’t too concerned about that, but was more concerned that I had to have an MRI now. I’ve never had one. I’m slightly claustrophobic, not too bad, but enough to make me nervous about the scan… not to mention the fact that I might just find what I was looking for… and I certainly wasn’t ready. I’m not a fan of looking for problems… they generally tend to find their way to me without looking. AND… they told me it would require an IV (which to me meant hooking me up to a tube with liquids, which I had not ever had in the past… freak out time!)
I won’t go into the details of the stress of having this MRI run, which in retrospect were not nearly at the level my stress of scans becomes now- NOT. EVEN. CLOSE. It actually wasn’t that bad. Just loud. They gave me earphones with music to listen to and since my head was not being examined (which has now become a running joke with everyone who thinks they should scan my head all the time), I didn’t need a helmet or get put into all the way. We were just looking at the hip. The IV that this anxiety girl was so worried about was just an injection without the tube. Lucked out on that one… just put that domino back upright before it hits another.
The ND (Naturopathic Doctor) called me a few days later and immediately said “Hi Amanda, Where are you? I want you to sit down and take a deep breath.” While this of course made me feel like I was going to die immediately because that is never a good thing when a doctor says that, I was thankful she was so kind and caring when she did say that. I trusted her… and still do to this day. If that woman called me today and said “Hide, the sky is falling!” I totally would! So, I sat down and took a deep breath. I honestly don’t even remember where I was when this happened, but I do remember that I was with a friend at the time consoling her about money issues and we were headed for ice cream after an errand of some sort that I had to take care of. The doctor said “As we expected, the good news is that you do NOT have necrosis. The not so good news is that we do see a large tumor in your leg bone near the hip. That’s probably what is causing the pain... (words fade to mumble in my memory because I’m stuck on “tumor.”)... full body scan… cancer… maybe benign… bone scan…” I’m really not sure about all of what she said anymore.
Long silence. I hear nothing around me. I forget where I am. My thoughts? I don’t hear them. I don’t have any.
Complete, fragmented immediate meltdown.
My day of consoling my friend just took a U-turn. I need to go home.
I could have cancer?