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!!! ❤️
"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.
Life in short increments. (One more month to live before life completely changes or I get extra time again.) That's where my mind has decided to settle upon once again. It's about one month before my next big scan date and anxiety has begun committee meetings inside of me like a little band of rioters collecting members while creeping around my thoughts. I've been attempting to ignore this for a few days, but today that aggressive little group grew quite a bit bigger, merged with the depression society and found another group: the "F* it" group. Those organizations don't really get along... when you have a "F* it" gang fighting an anxiety and depression troop, it's almost like you have an internal war of feelings happening all at once.
So, we all know what the anxiety group is like... even if you do not experience true anxiety on a personal level, chances are that you know SOMEONE who does or at least you know a little about it. But do you know about the "F* it" group of feelings? The easiest way to describe this would be to compare it to the show "The Big C." The part where the main character goes through this "F* it" phase and does crazy sh*t she would otherwise not do had she not been given a cancer diagnosis. Before this show came out, I didn't even want to see previews of it because I couldn't handle the PTSD flashbacks from all the triggers. After the first season was over, I forced myself to watch it... it was pretty similar to my "F* it" phase. Oh yeah, I had one. It was a good one too... until I realized I was still alive and might actually continue to do so... then the anxiety troop took over to calm us all down just in case we ended up living longer than expected, which is exactly what happened. If I had to choose a side, I would definitively join the "F* it" gang. It's definitely a lot more fun and manageable... but extremely risky. So, currently, I'm hoping that these two internal groups will come to a middle ground of some sort; I think that may be what most would call "normal." I'm not fully sure though, I haven't been normal in over a decade now.
Anyway... I'm going to see a NEW primary care physician in the morning. The only reason I'm doing this is because I unquestionably loathe the fat suit around my body- it's gotta go... and in order to exercise at the fitness center of which I would like to become a member, I'm required to prove my blood pressure is within a certain range or get a doctor's release. I'm not even sure this NEW doctor will give me a release considering this is an initial visit and she has no history with me. I'm quite bitter that I have to see a regular doctor... I'm still completely perplexed on the rationale or lack-thereof which prohibits Naturopathic Doctors from being primary care physicians. I miss my ND in California. I resent that I have to live in the dark ages (or what seems to be the dark ages we call the Midwest after having such an abundance of access to a variety of health options out west). BUT... I want to be very clear on something... I would live ANYWHERE for the family I have!!! I am completely in love with my husband an children and would do ANYTHING for each and every one of them! In addition to that, I am SO BLESSED to live in the neighborhood we settled in, we have THE best, friendliest, almost family-like neighbors and I wouldn't give them up for the world!!! And I genuinely mean that with all my heart. In any case... my current focus is to get this body moving again so I can feel better about myself, and so I can say I'm healthy and actually FEEL it! How does this relate to the anxiety I'm having? Well... simply... my body likes to flip out when that BP cuff goes on. WTF?! Honestly, it's not like it hurts... what is the big deal... I talk to myself and try to calm myself down, I do breathing exercises, I started taking beet juice and diffusing oils, I stopped drinking coffee a day ago (you like that? A whole DAY ago... what an effort... makes me feel like a cheater), I started eating more bananas for the potassium and I googled how to get that bottom number lower (because everything we read on the internet is true and works 100% of the time, right? Ha ha.). Well, at least I can say that I'm going to put forth full effort. The good news is that in the two days I've been recording my blood pressure (probably too many times a day), the top number is ok). But that darn bottom number! I finally got it down to 89 tonight... so I left it at one and done considering that was an accomplishment (or luck... either way, it was good so I'm ending the day on a good note. Usually I suffer through 3-4 takes with 5-10 minutes between then average them all). I just need to be in the 80's to join that fitness center... just in case I don't get that doctor's note (which I still need anyway for history of cancer and an internal prosthetic).
Alright... so it's late, really late... and I'm sitting on the computer contemplating how I'm going to handle tomorrow. I'm going to have to try to find my last blood work up, my scan results and take a whole bunch of stuff in to fill out the thousand page intake form these facilities have now. They said to arrive 15 minutes early, which to a cancer patient usually means 30 because it takes forever to fill out surgeries and medical history. UGH. Wish me luck.
I jumped online the other morning, as I do every morning in an effort to wake up my brain and eyes. I grabbed my phone, browsed emails, flipped to Facebook (which immediately made me feel old considering the stigma of it not being a forum for the younger generations any longer; and while I felt a bit bitter about that, I also sensed gratefulness and strength to be in the "older" category now... considering the alternative). The first post I saw was one by SU2C (Stand Up to Cancer), which oddly has since been removed. I don't see their posts often, which makes this one a tad more intriguing. It was a short clip on a woman who was diagnosed, fought, changed her lifestyle and helped educate family and friends then celebrated all within a year and the end of the video posed a question "How have you paid it forward?"
"How have you paid it forward?"
"How have YOU paid it forward?"
"HOW have YOU paid it FORWARD?!" It screamed at me!
My heart sunk. My breath was taken away. I don't know that I have paid it forward, really... though I desperately want to! Then, before I could go any further with my thoughts, the next line popped up "Share in the comments below." Oh, great... now the pressure is on. You want me to share that RIGHT NOW!?! I'm already struggling with HOW to share and pay it forward and now I have to share it immediately... in this post?! No... I can't even begin to figure this out right now. Not happening. So, I scrolled down dismissing it completely. I got through a few other posts, the whole time with guilt and contemplating ignoring that blatant request from a higher place... I knew where it was coming from. I've been feeling that tug grow stronger and stronger. I slumped down like a child told to do chores, then reluctantly scrolled back up and instead of sharing, I decided to analyze the clip to see just where and how this particular woman paid it forward... At first I was confused. How is going through a diagnosis, having a team of friends and family support you and changing your diet considered "paying it forward?" I wasn't trying to attack her, I was just unhappy with my lack of action and wanting to figure it out- how did she do it? Where did she start? How did she get it all done within a year? I'm on year 11 and still attempting to share and pay it forward and with minimal response to help me analyze my efforts... ONE year? Have I really not been paying it forward this entire time? Why can't I think of ONE way I have actually paid it forward? Then they started to pop into my mind... teaching my family about being healthy, teaching our kids how to shop at the grocery store, teaching them all what to look for in food products, sharing my stories (even if sporadic) to give even just one person a shred of hope and happiness in a time of struggle, mentoring fighters as a survivor (for the record, I still hate that term "survivor"... doesn't anyone have an alternative suggestion?), every now and then I will cross paths with someone and offer a bit of strength and encouragement (though I never fully feel confident, my heart is strong when I do this)... and more came through. Yet, somehow, I still lack the feeling of truly "paying it forward." It seems it's just all about me; and with that idea, I'm not content.
I sure would like to know how you pay it forward. Please write in the comments below. And, if you have any suggestions for me to take my aspirations of helping others to the next level... please share.
Love and hugs to you all... enjoy this beautiful day!
Happy New Year!
As always, with the new year comes new resolutions... Please post yours in the comments below!
I have the cliché ones this year... time to get back to my pastime routine of eating healthy and exercising. I miss me, the happy me, the healthy me. BUT!!! I'm not dead YET! So... LET'S DO THIS! I found a gym that might actually be a perfect fit. You may be thinking "a gym is a gym." Au Contraire... it is not when you have an internal prosthetic and all you've been told is not to cross your legs, not to twist to the right and not to bend to a 90° angle or further. I've gone through physical therapy (several times over), but those are all floor exercises and then what??? Besides, I hate being on the floor (I don't get down there easily nor do I rise from it well. Besides, it's gross... especially when you live with four animals and three children... and a husband) and I don't self-motivate at home anyway. Besides the same monotonous routines get stale. Over the years, I have visited numerous gyms, spoken with a plethora of personal trainers and none seem to carry the education and familiarity to help me figure out what I can or should not do with this prosthetic. They wish to help, but they are simply unable to tell me what to watch for regarding pain, or which machines would be good to use vs which may be harmful. I've only been informed to stay away from the elliptical... the elliptical was my past time favorite. Of course, right? I know i can ride a bike, PT had me riding the cycle every day... (insert music from The Little Mermaid here- "I want mooooooooorrrrrre.")
I can see how people can fall through cracks. I went through extensive PT and OT both in-patient and out. But once that expired, I've just sort of been on my own. If you don't continue to make doctor appointments and keep the conversation going, you can literally just sort of be forgotten. I'm surprised I am one of those people with this type of prosthetic. It was such a big deal to all the doctors when it happened to me at a relatively young age... I thought for sure they would want to study my progress and keep in touch with me, but they just put it in, gave me the PT/OT scripts and had I don't remember how many check-ups (that was in my shock phase). Then that was it. One day... it was my last, and I didn't even know it. Now I live across the country and probably not going to call the same doctor. I don't know if I'm supposed to be scanned every so often or just call if something seems off. (I am pretty sure I know the answer to that question, but I'm not going to admit it right now because I don't really want to open the can of medical options right now, it's happy-thought time.)
I'm determined to find a new routine... even 11 years later, I'm still encountering "new normals." So, I think I finally found a gym... it is connected with a hospital and has TWO personal trainers with experience in orthopedics!! It also has an in-house physical therapy room, a SPA, and two pools with plenty of classes to take that interest me (I may even try to dance again- ha, that's funny). I'm excited to get started and I want to begin my routine TODAY, which I surprisingly have time for, but am required to get a doctor's release before they'll let me start. UGH! See? The challenges seem to never cease... there are so many things that become trickier after cancer. Most people don't realize that. It's the little things we take for granted. of course, I have to revise my entire financial situation and cancel some things in order to join this place, which I am in the process of doing. But... in the end, it will be worth it!
So... Happy New Year! I hope that you have a resolution and a game plan to implement it... please share below... let's encourage each other!
Well, I have successfully completed my first year back as a public teacher after "surviving" cancer. School is officially over for the warm months! One of my most ridiculous fears with taking a job like this lingers on my mind daily... what happens if a panic attack sets in during school hours? Thankfully, I was somehow able to strike a deal with anxiety and we've come to some compromises, but I know that this is not always possible as anxiety is often more stubborn than I (such as with airplanes now- we are still at the discussion table for this issue... back and forth with terms we go until hopefully we reach an agreement with which we can both be content). I am fortunate to occupy the given space at this school because interestingly enough, environment can often be a trigger and this is a particularly good set up for me. This past school year, my mind and body stepped up to the plate with big girl panties on and lived each day one at a time. I did NOT pass out... not once. BONUS! I did not freak out to the point of having to abandon classes mid-day as I thought was possible. I did not hyperventilate too much ("too much" being the key phrase here). I did not space-out to the point where my students thought I was having a stroke or something. I did not have a vasovagal episode during school hours, or at all in fact... BIG BONUS! My students did not ever feel the need to call the nurse or principal due to concern for my health and well-being (or if they did, I didn't know it and it never physically happened). I was able to make it through every meeting without having to get up and walk around to ground myself. I managed to function. Imagine that... just function... what a huge success that can be sometimes.
Yes, these are legitimate concerns. I 100% realize how absurd every single one of them sounds too because I didn't always have these concerns, remember. So if you happen to be laughing at the craziness here rather than relating then you do not suffer from true anxiety and/or panic attacks and therefor, please do not say you do in phrases like "I'm having a panic attack" or "I'm having anxiety." They have become very overused. If you relate to these, then you know what it feels like to worry about the simplest of things that others take for granted- or maybe it's not that they take them for granted, but rather just accomplish without thought... we call those "normal people," right? Because, for some reason, we (anxious people) have decided that we are not normal any more. But that's not really true. We ARE normal... everyone just has a different normal. Along with the term "survivor" I also do not care for the phrase "new normal." How many of you have had to face that term? How did you handle it? It didn't sit well with me and ten years later, sometimes I find myself dwelling on my old normal and missing my former life... but please don't get me wrong, that doesn't mean I do not like my current life. I am immensely appreciative for all that surrounds me and for the individuals whose paths intertwine with the one laid out for me. I have a very different life now after cancer. I don't know that I will ever fully be comfortable again as I once was, but somehow, I seem to manage to SURVIVE and live. I am aware and careful not to create too many similarities in my new life to my old life as I do not want history to repeat itself.
Getting back to summer... now that we have arrived, I know scans are coming. Thankfully, my doctor allowed me to break for 7 months this time rather than 6 so that I could celebrate our family birthdays before heading to Houston and starting the clock again. But, sadly, I was not able to stretch it to 8 months to ensure my participation in the big birthday vacation to Ireland and Scotland for my dad... which will come AFTER scans. My mom is the definition of positive thinking and freely books these trips on the assumption that all will be fine with this next set of scans. I still do not understand how she is able to do this. "WHAT IF?!" If you don't have someone in your life to pull you out of that mind-sucking leach of a "what if" state and force you to accomplish things outside of your comfort level for your own benefit, then I highly recommend finding someone because without my mother, I would be purchasing all the insurances, all the backup options, all the extras that will allow me to cancel last minute without penalties and likely spend more money on those things than if I just have to cancel when the time comes. Planning things is not easy for someone dragging panic around all the time and ironically, planning helps push panic aside.
I am looking forward to that trip and am going to focus on that!
I am looking forward to summer!
I am looking forward to celebrating our birthdays!!!
I am looking forward to each day being more "normal." (...and I hope you are too!)
Finding balance is a difficult thing to do for me and so here I type feeling guilty that I have yet again failed to write for the last two and a half months. I need to join a zen yoga mediation club or something. I am sorry. I'm working on it. Please forgive me and I hope you continue to read these posts whenever you need them most.
So we finally did it! An ENORMOUGUNGOUS "THANK YOU" goes out to everyone who donated funds for my 10-year cancer-free anniversary in March! We raised just under our goal of $1,000, but spent just over that amount! Another HUGE "THANK YOU" goes out to our local Michael's store who generously discounted our order by 30%! As you can see, we were able to purchase so many fun things that our receipt list was taller than we were and it was filled with art kits, art supplies, crafts, coloring and activity books, model car kits, craft lap desks, pens, markers, model magic, glitter glue, princess crowns and so much more... for boys and girls and for all ages! After spending a couple hours thoughtfully choosing each item and watching our cost, we checked out and headed over to Target to purchase four $50 gift cards for families or for the older children who might not be interested in art supplies or crafts. As my husband drove us to the hospital donation dock, the kids and I wrote some inspiring and happy words on cards where we put the gift cards.
It was heartwarming to be able to do this as a family and watch our girls be excited about the whole process. What loving hearts they have! We literally shopped for over two hours and not one of our children thought about themselves the entire time... not once did they ask if they could get something for themselves... they were just simply in the moment and happy to be able forward love and smiles to kids stuck inside a hospital.
When we arrived at the hospital, we were greeted with a friendly smile from Jessica, our donation coordinator. She helped us unload and set everything out for a photo and then presented our kids with "Super Donor" Certificates. We were all so excited throughout the entire day! I can't think of a better way to have celebrated my 10th anniversary of being cancer-free and am looking forward to doing it together again at my 15-year milestone!
Yesterday I had so many mixed emotions... excitement battling anxiety.
Today... I am thrilled to be alive, full of energy and yet I am still having flashbacks. Thankfully, I'm able to quickly overcome those nervous feelings that dwell within the memories; that's not always possible for me, but it is today! Proof that positive thinking can help overcome anything.
Ten years ago today the team of doctors removed all those cancer cells from my femur (along with the femur portion they had taken residence in) and they performed a total hip reconstruction. At the time, there were only a handful of doctors skilled and versed enough in this specific prosthetic to perform this surgery and they really didn't have many answers for me about the prosthetic since it was so new and was also not (I'm thinking "installed" but I'm sure there's a more appropriate and friendly term... but "installed" sort of works in this particular explanation given the feeling inside where it functions) installed in many people and those that did have it were not nearly as young as I was at the time. No answer on how long this prosthetic will last, no answers on what my mobility capabilities would be... not that they can actually answer those questions definitively anyway, but really, everything was just based on hope and faith that I would keep living and moving forward.
I suppose I had a choice to not undergo this multiple-part surgery process and just accept the fate that the doctors had given me, but today, I'm sure glad my family pushed me forward! (Thanks, Mom, I'm sure you're glad too considering I'm your favorite.)
Today, I am celebrating life with everyone I run into... co-workers, students, family, friends, acquaintances, social media friends, YOU. It's a great day today, ten years after I should have died. It's a great day every day, but that's often forgotten with the mundane stresses of daily routines. I'm looking forward to cleaning my house (that's odd... but really, when I have a clean house, I feel so much more relaxed) and I'm looking forward to planned vacations. I'm very thankful today and I'm so blessed to have the support and friendship of so many around me. Thank you all!
Today, I would love nothing more than to hit our $1,000 fundraising goal so that our family can
pay it forward to other families fighting cancer. Every dollar helps and we have reached $685 so far. I'm hoping to reach that goal today so that we can deliver supplies to the hospital families on Tuesday. I hope you will help if you can. Please click the link and read about our mission: