Iâm sure youâve heard this phrase, probably hundreds of times. Although it is great advice – what does it actually mean?!
Thereâs a lot of different ways this phrase is interpreted, most of us associate it with rest. When your body is sending you cues to slow down or some time for self care. Thatâs all true, but what about all the other important aspects of it?
Thereâs a lot more to it than youâd think. Most of us with chronic disease are in tune with whatâs normal and whatâs alarming.
âYour body will let you knowâ
Most people when recalling a diagnosis story, theyâll tell you that golden advice. They will say âyour body will let you know, you just have to listen to itâ so what does that really mean? What are we listening to or looking for? Do we run to the doctor each time we have a funny pain?
Well that depends, first, you need to get to know your body.
âno one knows your body better than youâ
Not all of us are in tune with our bodies, especially if youâve never had a major health condition. We can brush off a lot of symptoms because weâre unsure of their importance. So Iâm going to give you some tips and explain a bit more of what to be looking for
In order to get to know your body, you have to start listening to it. If you have a normal every day pain level of 2, take note of that. If youâre someone who has no pain at all, take note of that too. If youâre a woman, take note of what your breasts feel like, on and off your period. Get to know your smells, if you normally donât have a perspiration smell or do. Do you often get headaches or is it unusual for you? Do your eyes twitch when youâre tired, or all the time? Is your skin very dry? Always or just sometimes? Howâs your mental state? Are you a very anxious person or very calm? Always tired or full of energy?
These are just random examples, but you get the idea. We have to get a baseline idea of what our bodies normally do in order to know when itâs giving us cues. Or in some cases, alarm bells.
Itâs pretty normal for most people to have the odd symptom here and there, itâs typically nothing to be alarmed about.
When I start to become more alert is when I experience a new symptom that Iâve never had before or havenât had for a very long time. I take note, and I follow it to see if itâs getting worse or becoming consistent.
I break down the urgency by persistent or consistent. If youâre experiencing the same symptom over and over again, thatâs when your body is really trying to tell you something.
If Iâm experiencing a symptom thatâs worsening, thatâs when Iâm making a trip to the doctor.
Why is it important to listen to your body?
If not you, then who will?
Going back to when people are diagnosed, later when they recount their story, they remember certain cues or things that were off. They recall things their body was doing that perhaps didnât seem like such a big deal at the time. I canât tell you when something is urgent, because everyone is different. I can tell you to listen and try to judge with the best of your knowledge.
I can also tell you that if something impairs your daily life or capabilities, itâs not to be ignored.
Iâll give you some examples of things I personally take note of and how I deal with them.
Symptoms
If my headaches become more frequent, I start to take note. Itâs not for nothing, but it can be due to lack of sleep, or stress. If they become more frequent and severe, thatâs when Iâll bring it up at my appointment.
Energy levels and fatigue: if Iâm sleeping well, and doing all the right things – yet Iâm still exhausted⌠Iâll take note of it.
Perspiration: if it changes or has a different smell, I take note of it. Hormones can change the way your body smells, so itâs good to know the differences.
Abdominal pain: There can be so many different types of pain, I for one experience pain on a daily basis for numerous reasons. So I take note of the level, the location, and the frequency. Is it linked to an activity? A food? Is it the same pain? How would I label it?
Skin changes: I used to think this wasnât a big deal. âMy skin is just dry because of winterâ, or âI just have dry skinâ. That may sometimes be the case, yes, but Iâve also had major skin changes to alert me of my thyroid changing, and my cortisol levels depleting. Many issues in our body lead to a hormone imbalance, so itâs important to be aware of the trends.
Hair loss: itâs normal to lose a few strands of hair in your brush, and in the shower. However when youâre losing clumps, getting bald spots, and it just falls out without brushing or washing, itâs a cause for concern.
Brain fog: some of us can get a bit foggy when weâre overwhelmed or not sleeping enough. However, brain fog is also a major symptom of many illnesses. It can also be caused by medications. For me personally, I take note and try to link it to a specific cause so I can deal with it IF possible.
Bloating: this can be a major issue for some of us, it can be something that needs to modified in your diet. Thatâs the first thing I try to take note of by trying to link it to a food intolerance. Next I will make note of the severity, does it happen after eating? Does it happen out of no where? Is it painful? Does anything help it?
Mood changes: first thing I ask myself is if it falls under my normal reaction or trends. I label the feeling, try to link it to something, and if not I ask myself if itâs related to lack of self care. If itâs really an irrational random reaction, I take note because itâs typically linked to something more important.
I could probably go on for a while with the types of symptoms I feel, but you get the picture. First take note of what it is, then try to keep an eye on the trends. Frequency, severity, and description. If youâre someone with a lot of different symptoms, itâs best to take note of the ones that stick around or are particularly painful.
Once you have your baseline of whatâs ânormalâ to you, you can then start listening for the alarm bells and cues.
Remember, often it IS a gentle reminder to take it easy, slow down, get some rest. However the only way to know is to be in tune with your body, thatâs when you can begin to really listen to what itâs trying to tell you.
When I make note of all of these things, I generally try to make changes in my control to see if anything helps. If nothing changes or it becomes worse, I will talk to my doctor, get some labs done, and see what kind of plan we can come up with based on the results.
You can read how to best prepare for a doctorâs appointment here.
Sending love, unicorn magic, and a whole lot of fabulous your way đ¤â¨
You may have heard this term before, maybe even more so recently. Maybe itâs happened to you, itâs not something new, but rather something thatâs being acknowledged and talked about more.
So what is medical gaslighting?
(gaslighting) â the repeated denial of someoneâs reality in an attempt to invalidate or dismiss them â is a form of emotional abuse.
(Medical) gaslighting happens when health-care professionals downplay or blow off symptoms you know youâre feeling and instead try to convince you theyâre caused by something elseâor even that youâre imagining them.
It can sometimes be tricky to identify when itâs happening, sometimes itâs a clear refusal to treat or acknowledge a patientâs symptoms. Sometimes they will acknowledge the symptoms but not want to treat you. However, it doesnât always happen through words. Some examples of non verbal can happen through: prolonged silence, a condescending sigh, sarcasm, a tone of disbelief or disapproval. None of which will be noted in your medical file, only imprinted on your heart and in your mind. When replaying the events, and asked âwell what did they say?â You may not be able to recount a time that they ever outright told you that youâre over-exaggerating, only you will have felt the dismissal through those non verbal communications. You will leave with no answers, more questions than when you began.
After this happens to us, we often leave questioning our own reality regarding our condition, which can lead us to not wanting to talk about the severity our symptoms anymore, or at all. Leading to a prolonged diagnosis, and danger to our ongoing health.
Which leads me to why Iâm speaking out about it. Most of you know me for being an advocate for rare cancer, and more so, always having a positive outlook or spin on tough situations.
Talking about a tough situation doesnât make me less positive or weaken our strength, it empowers us with the ability to move forward with our same positive outlook. I donât want any one situation to disable my ability to speak for myself, advocate for myself, or cripple me with fear. For quite some time, this was the case. The moment I sensed it was happening to me, I would just freeze. I couldnât speak, Iâd instantly get emotional, and I would be filled with fear that Iâd be dismissed and get sicker all over again. I wouldnât want to repeat the events so I too would diminish the severity of my symptoms.
Why? before I knew what the term âmedical gaslightingâ meant, before I even heard of it, it happened to me for years unknowingly. My clear symptoms being blown off as anxiety by my specialist is what led me to receiving an incurable advanced stage diagnosis of metastatic pheochromocytoma.
Iâve come a long way from that period, and Iâve used it to learn how to fiercely advocate for myself. To know what type of care Iâm entitled to, and to know my rights when it comes to my health. Sometimes, it just takes ONE situation to make you feel like youâve gone backwards. By sharing, this is me taking the step to go forwards and hopefully empower you to feel the same.
I just want to be clear, my current team of doctors and specialists are I-N-C-R-E-D-I-B-L-E. The problem is, during an emergency, you canât always wait to see your specialist or main doctor. Sometimes, we require emergency careâŚ
My chest is heavy as Iâm writing this, I didnât realize how hard this was going to be. RegardlessâŚ
Iâm going to share about what happened a couple of nights ago when we had to go to emergency.
I was having a great day, I felt better than I had in a long time. I was relaxed and going to work on a DIY wreath. I suddenly felt a âpinched nerveâ type feeling in the right side of my neck. So I decided to just relax for the night and watch a show. I got extremely weak and felt overcome. Then a sudden headache hit me. I wasnât sure if I was going into some type of flare, so I took the necessary medications when that happens. Still no change, so I went to pick up my phone and record a âstoryâ post to say I wasnât feeling well. When suddenly I noticed that my eye looked strange. One looked enlarged and had a weird glare, my pupil was misshaped, my eyes didnât match! I was sure it was the video, so I took a photo. I had never experienced this before, I asked my husband to look and he confirmed one pupil was much larger than the other. I went in the bright light of the bathroom, both pupils returned to a smaller size. I stepped back out into the dim lit living room to re-check, and they then went two different sizes again. Then they just stayed like that. Of course I knew this could be a number of things, but since I had no history of it happening, a sudden change like this is worrisome.
One pupil larger than the other
I sat there weighing my options:
Go only if it gets worse (potentially too late if itâs a precursor to a neurological event like a stroke or aneurysm) ORâŚ
Go right now while I can still speak clearly for myself and donât require emergent complex care
When I go to emergency, like most chronic disease patients, it has to be for something BIG. Something that I have no power to treat myself, something that canât wait until tomorrow. It often takes multiple people and specialists to convince me to even go.
This was a time where I certainly couldnât know the seriousness of the event myself. I also couldnât risk going to sleep and waiting to see my doctor. My thought was: Iâll never forgive myself if I donât go get checked and it gets worse before tomorrow. Put on your big girl pants and GO, Miranda.
So thatâs what I did, I grabbed my hospital âgo bagâ and all of my supplies needed to speak for myself if Iâm unable. My medical ID bracelet, medical resume which outlines my conditions, allergies, and life saving emergency room protocols in the event I go into crisis. We began mechanically preparing for something weâve done hundreds of time. Knowing that it can either go extremely well, orâŚ.. the opposite
My local emergency rooms have been experiencing extreme understaffing, and even close the emerg 3-4 times a week. Even before covid, Iâve not had the best experiences. So we made the decision to drive 1 hour from home to a hospital that I had never been. A blank slate, I felt good about it, and knew it would not be filled with people and covid cases since itâs a very rural hospital.
We arrived to an empty parking lot, an empty waiting room, not a soul in sight. At first we thought this was a good thing, no worries of getting sick or having to be isolated. Low wait times, and all of the care directed towards me since Iâm the only one there. High five!
Empty emergency room
I was triaged right away, my husband who is my primary caregiver couldnât be with me due to covid. So I explained everything that had happened in detail, and added that I have a very rare cancer with some secondary conditions. All information is relevant when visiting emergency, itâs not up to me to decide what they need to get a clear picture. So I give them the basic facts needed for this visit and let them ask the rest.
I was immediately called, to where I was met by a nurse who immediately told me to go into the exam room. I asked if she had been informed of my emergency protocols that the triage nurse took copy of, *if I am going to have to be alone in a room without supervision in a hospital with no one around⌠for my own safety I have to know that if Iâd go into crisis, they know how to respond properly. This is something I have to bring up any time I will be alone, or when Iâm at higher risk of crisis. Since I canât be treated with an epi-pen and thereâs conflicting conditions, itâs not something I can choose to leave out.
She responded with sarcasm that No, she was not informed in the 30 seconds it took to call my name.
I laughed and replied that I get it, my bad! I then proceeded to explain WHY itâs necessary for all of us to be on the same page and that my protocols are designed for emergency room settings by my specialists to outline how to treat my specific case IF any of the following happen.
She cut me off mid sentence and said âI REALLY donât careâ and stormed out of the room. Leaving my husband and I to stand there and wonder⌠is this how the rest of the night will be?
He instantly reassured me âwell, sheâs just one person! The doctor will be niceâ and I was just grateful that he could be there to be the one to respond IF anything should change with my health. He has all of my injections and medications with him at all times, and knows better than anyone the signs of when to use them.
The doctor came in without introducing herself, and began the norm of asking about why I was there. I started with my eyes, being the main reason I had come in. And then followed with the precipitating symptoms that made the eye issue more worrisome, the neck and head pain. I began having trouble explaining myself, so my husband added the time of when it all began to help me out. She abruptly looks at my husband and says âso she canât speak for herself? Youâre here because she canât speak on her own? Youâre here to speak on her behalf?â
Not that I need to defend this, but yes. My husband literally is there for when I canât speak for myself. Stress makes it sometimes impossible for me to get a clear speech, I can be fine one moment and then unable to speak or think clearly the next. Itâs happened many many times, and itâs the most terrifying thing to happen to a person. Especially when surrounded by strangers.
I then spoke for myself, answering to why he is there. Explaining what I tried to explain to the nurse. I was preparing for the chance that if I had to be kept for observation, they would understand the severity in which my health can change. From one second to the next, which is why itâs essential for everyone treating me to read and understand the protocols. IF anything were to happen, it needs to be decided within seconds. Those seconds are what will make the difference between life and death.
Rather than asking me more about it or if itâs happened before, she replied by saying âso then we can do that for you. He doesnât have to be here, if anything changes we are capable of knowing if you canât speak. Or do you think we arenât capable?â
I could already know by the clipped tone, sarcasm, and tension in the room that I was no longer comfortable. This is the very beginnings of my exam, and we havenât even begun to speak about WHY I am there. I didnât feel confident in the surroundings, if you put yourself in my shoes. I have a rare condition thatâs already often misunderstood, and require a basic level of understanding in order to be safe. If this level is not met, I am not being left in the care of people who are responsible for my life.
I didnât want to argue, so to avoid putting fuel on the fire, I calmly explained that Iâm not questioning their capability. Itâs just if Iâm alone in a room, and it happens within seconds, in the event Iâm unable to speak, logically I canât ask for help. I canât call for assistance, so yes, my husband IS in fact there to speak for me in the event that I cannot.
What happened next is what truly caught me off guard and I knew I wasnât going to be able to stay there should I absolutely need to.
I wanted to get back to the point of why I came to emergency, and have a proper exam for my eyes. So I redirected the conversation and said âcan I tell you why Iâm here?â She threw down her clipboard and replied âI HOPE you know why youâre here, they woke me up in the middle of the night for this!â
In that moment, I lost all hope for a decent exchange. I was made to feel that I was inconveniencing everyone, that my issue clearly didnât warrant an emergency. I pushed through my inner voice telling me to just leave, and reminded myself that if I leave without so much as an opinion I will be right where I started. I will have to re-do this at another emerg, and I have a right to proper care. I reminded myself of what I preach, and decided I wonât let this stop me from what I came to do. Ask for help, receive care from the people who are there for that very reason.
At this point she began a basic neuro exam, repeating the questions about what brought me in. Each time she repeated her question, it was said in a more condescending way. (Non verbal cues) she began mixing the order of what I had told her. The neck pain, followed by the sudden headache, and then the pupil dilated. I corrected the order, to which she replied âso you had a headache and you took a Tylenol and it got all better? You took an Advil? A Tylenol? A motrin? What did you take?!â(No where did I say I took anything for my headache) âokay so then your headache wasnât bad enough to take a Tylenol AND it went away?â
No, I just donât typically take TYLENOL for my type of headaches. I take a steroid or an antihistamine depending on what type of headache I think it is. This exchange continued on for a bit, the accusatory tone, the trip me up questioning. All of which I endured to get a proper response about why I had come.
My husband patiently waited to interject and let her know that Iâve had two previous strokes. Which is why we found it of urgency to come in and get this checked. We wouldnât think of coming to the hospital unless itâs an EMERGENCY.
She didnât seem to find it very concerning, instead she asked me âwell why isnât THAT in your chart then, if youâve had a stroke, wouldnât you include it in here?â
I was caught off guard and stunned, so he replied for me. âIt happened before her adrenaline was controlled, before she was diagnosedâ I always include my most current conditions, because a lot has happened and I canât fit them all on one page, I donât think I could fit them in one book let alone a page.
I went along with the touch your nose then my finger game, walked a straight line, and âpassed the examâ.
She then began to finally explain that they donât do labs at night, she canât take my blood, she canât do a scan, they donât do anything in the night hours. They are there for emergencies only. A-ha, finally. The confirmation that I am not by their standard an âemergencyâ. Okay, see ya!
But then âŚ.âeven if I DID do a scan, it wonât tell me anything because youâre not symptomatic anymoreâ
Me: âokay, so⌠if thereâs nothing we can do, do I just go home?â
Doctor: âwell, we can keep you to observe you to see if it happens againâ
Me: âokay and if it doesâŚ, thatâs when we would do tests and a scan?â
Doctor: âwell maybe, MAYBE in the morningâ
Me: âso if it DOES happen again, what would you do?â
Doctor: âwell like I said we will just monitor you and see if it doesâ
(Still unclear as to what that will achieve if theyâre unable to do blood work or imaging)
Doctor: âI mean youâre fine now, your neuro exam is fine, youâre not having the symptoms anymoreâ
Me: âokay so I can just go home then? If thereâs nothing, I can monitor myself and go to a hospital if it changes?â
At this point sheâs said Iâm fine more than once, made me feel Iâm there for nothing, that thereâs nothing they can do at their facility to look further into it. Itâs not a guarantee that they will do anything further even when they ARE able to. So the logical conclusion is that I go home and wait for something more to happen and seek care IF it does. If not, see one of my doctors in regular clinic hours.
The doctor then says âokay, well Iâll give you two some time to decide what YOU would like to doâ
My husband and I are sitting there looking at each other with the same thought, why are WE (the patient) being told to decide what should happen? Is it to not be liable if something does in fact happen tonight? Either way, at this point you couldnât have paid me to stay in their care. So I got dressed, and we firmly decided to go home and sort out another plan of action if we could make it through the next 4-5 hours till the doctors open up.
When things changedâŚ
She returned into my room, me fully dressed, standing ready to leave. I thanked her for her time, and proceeded to explain Iâd feel safer being at home and will go to a bigger hospital if the symptoms return.
She was completely stunned, which surprised us, now her whole demeanour changed, her mindset, her outlook on my current âconditionâ. She began back peddling and referring to me as a stroke patient. (What?!) she never once mentioned the risk of stroke, even though thatâs EXACTLY why I came in the first place.
The entire time I had been there, I was made to question why I was there. That I wasnât an emergency, not even a brief talk about what could have caused it. The entire exchange was bizarre, and downplayed to the point where of course it made more sense for me to go home and seek an alternate opinion.
The very same doctor then began to speak with more urgency about how I can be fine at this moment, but the same âneurologicalâ event that brought me in can happen again and again until POW! âThe big oneâ happens. Referring to mini strokes and then a large stroke. To which maybe it will be too late to go to the hospital.
Stunned, confused, and curious, I asked: âsoâŚ. If I stayed, and you monitor me, and even if the âbig oneâ happens, what would you do?â
Doctor: âwell we would still have to ambulate you to the other hospital that could treat you (an hour away where we live). But I still wouldnât send my stroke patients there! If I had a choice, Iâd send them to the civicâ (by which she means a larger teaching hospital in a different province) but since itâs a different province, I canât do that. So Iâd have to send you to the other hospitalâ
Me: âokay⌠well, our home is much closer to that hospital compared to here. We are just minutes away VS the hour it would take for you to get me there. So for me it still makes more sense to be home, and that way we can make a choice depending on the severity whether we ambulate there or jump in the car to the civic across the bridgeâ
Doctor: âif you stay here we can monitor you and maybe do a scan in the morning, I see youâre allergic to âdyeâ (meaning my life threatening allergy to iodine) but I mean if we need to do a CT under emergency we will âjust do itâ
Me: âummm, you canât just âdo itâ when someone has a life threatening allergy to iodine. This is is one of the reasons Iâm safer at home. If you were to administer iodine even by error, you canât give me an epi pen when I go into anaphylaxis. THIS is what I tried to explain in the protocols earlier, to you AND your nurseâ
Out of curiosity, I then asked âwhat if I just went to the civic directly now and have them do the scan? Oh right, you said they wouldnât see anything anyway right?â
*crickets* ugh.. ugh⌠well⌠not necessarily
Like, Iâm sorry, but why scare me now? I had been here for an explanation or a severity level of how worried I should be the entire time. To which I was made to question why I was even there and scolded for waking you up. But only when Iâm walking out the door, thatâs when we get berated about the danger of the situation? Suddenly Iâm a âstroke patientâ? Suddenly everything changes? No. I wonât be roped into this ping pong match. I wonât continue these mind games. I am standing my ground, and I am leaving. I am getting far away, and I will not be made to feel that I AM the one whoâs doing something wrong.
The aftermathâŚ
Everything about this entire experience was wrong, and the one thing I do have the control over is where I go and when. Right now, Iâm going to where I am safe. Home. Within closer proximity to hospitals should I need to go. I will be under the care and supervision of my husband who knows my vitals and cues of when thereâs something wrong. I will be safe
As we left the hospital, I again thanked them for their time. I gave grace and understanding that wasnât deserved, I allowed more room impatience due to the pandemic. I wanted to start and finish by being kind regardless of how I was treated in return. Still, I couldnât help but leave feeling more confused and scared then when I first came.
That confusion was followed by anger, and outrage. WHY did this happen again?
Iâm nice, Iâm calm, Iâm organized, I provide all of the facts, I am a great advocate, I have logic, I donât quote google, I awaited every opportunity to be examined and so badly wanted to be given the clear or some type of explanation as to what had happened to me. Instead I was made to feel my symptoms were nothing at first, it was downplayed, dismissed, and then confused even further when suddenly it became a big scary thing. It made no sense
I arrived home, and within 20 minutes, and in the dim light, my pupils became different sizes again. I wondered to myself, why didnât she do my eye test in different lighting based on what I told her? I was so exhausted at this point, I took another photo, and decided Iâm going to sleep.
We made a plan as to what we would do in the event of the âwhat ifâsâ. My husband stayed up all night doing checks, and we made it to morning.
I was so exhausted yesterday, just mentally exhausted from the whole experience. I slept until 8:30pm last night. I was proud that I stood my ground and left, but couldnât help but wonder what we would have done had my current condition been more unstable.
This isnât the first time something like this has happened to us, and Iâm certain it wonât be the last. Yesterday my husband spent the morning and afternoon contacting every doctor I have to get their opinion on how to proceed. Who to get help from, etc.
Most of the answers pointed towards neuro. So we arranged an emergency appt with my neuro, and we just spoke on the phone. I explained the situation, he congratulated us for knowing so much. For doing the right things at home, for documenting how the eyes respond in different lights, for being able to tell the story with such a good recount. All of which led him to ordering an MRI of my neck and head right on the phone, focusing on the artery in my neck. (The pinched nerve I felt at first) after discussing, he quickly realized itâs most likely not the eye that was larger thatâs the issue, but maybe the eye that is smaller: based on the clues I gave about both eyes constricting while in bright light, but then one going larger in the dim light. He said itâs normal for eyes to go larger, but itâs NOT normal for one to constrict. So the opposite eye may be the issue, the one that stayed small. See?! Doctor/patient team work at its finest.
I wish I had a clear explanation as to what you can do in the event that this happens, but itâs very situational. One major thing I want to make clear:
Never feel pressured to stay somewhere that you are not comfortable.
Never feel you have to do anything you arenât comfortable doing
Never feel you donât have the option to get a second opinion
Never feel that you arenât entitled to leave and seek help elsewhere
If itâs unsafe to leave, but you arenât comfortable in the care where you are, you can request a medi transfer to another hospital who has the means to treat you.
The reason Iâm sharing this is to let you know that it can happen, and you have every right to feel outrage. We have a right to proper care, and not be made to feel as if weâve done something wrong when seeking medical attention
Emergency situations are a bit more tricky depending on the severity of your condition, but as I said, IF you arenât feeling heard or safe, but canât leave that hospital, please reach out to the patient advocacy number for that hospital and get help.
I was fortunate in THIS situation to be able to speak for myself, to have someone I trust with me to validate what happened. To confirm itâs not just âin my headâ. But if you donât, share within a patient support group. Anywhere that you can get support and be reassured.
Above all, please donât let this prevent you from seeking medical attention when needed. I was so hesitant to go to the hospital a couple nights ago, and all of my fears were confirmed despite how prepared I was, despite how kind I was. But Iâm not letting that stop me from getting the care that I require to keep me safe and THRIVING.
I have no answers just yet about why my pupils did this, and whatâs going on. But I now have leads, we have made progress, and will eventually get answers. Through our own advocacy efforts and reaching out to the patient community with similar conditions, someone was even able to suggest a syndrome that made sense to my neuro. THAT condition is now being investigated, all because of sharing and asking questions. Using technology!
I imagine Iâll have to do a lot of tests that will uncover nothing, some that will eliminate a cause, and eventually one that will uncover it. I however will not stop until I have an answer.
By sharing this, itâs my therapeutic release of letting it go and not giving it power over me. My illness isnât going away, so I need to be confident and able to speak when I can for myself.
I hope in some small way if something similar has happened to you, youâre reminded that itâs not your fault. You are deserving and worthy of kindness, patience, and answers.
I havenât shared since, because I needed time to rest and recover. In the interim I was able to get closer to answers and strongly advocate despite having this happen as a big hiccup.
I always say, we are stronger together. Sharing is often beneficial, and can give a voice to something you have experienced and didnât know how to feel or how to express it to others.
Thank you for reading, for expressing concern, and for your support.
I can call myself an expert by now, I would estimate in my short time on this earth⌠Iâve had at least 70 scans. Probably more, but I donât keep count.
All types of scans, CT with contrast, CT without contrast, MRI, PET scans, MIBG, Octreotide, bone density scans, Gallium 68, and thatâs not including your average ultrasounds and x rays.
So, I will hold the title of expert level, I might as well get something out of it. Iâm going to give you the best tips I have to be prepared. I find the best way to remove the fear, is to know whatâs coming. So hopefully by me sharing what to expect, the things we can control, it will eliminate some of the anxiety leading up to it.
Yesterdayâs scan was an MRI, not my favourite type of scan. But then again, they all have their woes.
A lot of people askâŚ
âwhat is the best type of scan to get for a Pheochromocytoma?â but hereâs the thing⌠it is so specific to your case.
Specific to the timing, is it diagnostic OR prognostic? Is it a follow up after surgery? Is it to see the tumor size or is it to see the tumor activity? Is it to see if youâre eligible for future treatment?
See, thereâs no one size fits all answer.
But since this isnât going to be about all the different types of scans, I will focus on the one I had yesterday: the MRI
Iâm normally a CT girl, not because itâs the best, or because itâs easier – quite the opposite. A CT is normally best for diagnostic imaging, itâs less detailed than an MRI, but gets a good overall view of the body. But Iâm deathly allergic to iodine, which is the injectable solution used to light up your insides. So when I do a CT, I have to go through an exhausting allergy prep in order to safely get imaging. I canât help but giggle, having a rare cancer that requires constant imaging but being allergic to the process. Awesome.
Salt in the wound, am I right?
So because earlier this year we discovered the link between my pheo and mast cell disease, making it no longer âjust an allergyâ but a life threatening anaphylactic condition, we switched to MRI.
Still with me?
MRI also requires an injectable solution, called gadolinium. But the chances of having a reaction to it are very low. I still prep, and Iâm cautious, and I still feel the aftermath of it in my body for a couple of days. But nothing life threatening, phew.
An MRI is a more detailed image, so as previously mentioned, for me it makes sense as we already know I have cancer. Weâre not looking for it, or diagnosing it, we want to see all the gory details. We want to see detailed imagery if it has metastasized further, if itâs grown or perhaps shrunk, or if itâs magically disappeared? A girl can dream.
Before I go into explaining what an imaging day looks like, and what to expect DURING an MRI⌠I want to talk about what the before, leading up to it.
In the weeks leading up to my scan, I get a nervous energy that I donât even realize I have. I get very fixated on certain tasks, I get a bit scattered, foggy, yet I canât settle down or rest. I feel the need to always be doing something, planning something, or helping someone else. Itâs my way of not focusing on what is about to happen.
In the days leading up to my scan, I allow myself to realize the impact of whatâs about to come. What this scan will mean to my future. My brain tries and tries to acknowledge both outcomes, but I donât allow that.
I refocus my mindset to the impact of hearing the good news, I only focus on the good news. This may seem like blind hope, but to me, why focus on the things we canât change?
Until there IS a problem, why create one?
I used to always go in with the attitude of expecting the worse but hoping for the best. It was a way of protecting myself and not having my world shattered if I heard bad news, and letâs be real⌠I heard a lot of bad news. So it became a routine, Iâd go in, do my scan, and deep down knee what was to come.
Only in the last few months did that start to change, my life has changed. Well, my quality of life I should say.
Feeling hope to this magnitude, itâs a tricky thing. As previously mentioned, hope can be the hardest thing to have. In fear of it being ripped away, which has happened to me quite a few times.
But I canât live a life expecting misery and feel no hope and dream no dreams, because that wouldnât be a very nice existence. So I reframe my mindset to feeling hopeful, manifesting healing, dreaming of whatâs to come, and praying for another miracle.
I figure, no matter what the outcome, I will deal with that when the time comes. I canât control the outcome, but I can control my feelings leading up to it. A-ha! See?
With cancer, or any chronic illness really, we often feel so helpless. Not in control of our own bodies, our minds, our future. So I like to be in control of anything I can. In my mission statement I wrote âholding onto my fabulous is the one thing I can controlâ and thatâs still true.
Except I realized my âfabulousâ is much more than just lipstick or hair. Itâs who I am, itâs everything that makes me, me!âŚ
So if I had one piece of advice to those of you who are experiencing scanxiety – itâs to acknowledge the possibility of both outcomes, but put your focus on the one you want. Itâs okay to quickly consider the alternative, but donât allow it consume you. Ask for prayer, ask for love, good energy, ask for support. Do what you need to do to feel hopeful.
Set your intention on the good, and in the days leading up to your scan⌠live your life as normal. Go about your day, clean your house, exercise, bake, talk to your friends and family, make homemade pizzas with your kids, shop till you drop. Do whatever makes you feel good, and most of all, normal.
I canât tell you just how many sugar free cookies I baked, and how many celebratory outfits I ordered. Yes, celebratory. BecauseI fully intend to be celebrating the outcome. Thatâs the intention I set, and every day leading up to the scan, I meditated about it, I sang about it, I cried about it.
And now Iâm writing about it. Iâm putting it out into the universe
It
Will
Be
Okay
When I began writing this blog today, I wanted to explain the process of an MRI to take a bit of the unknown out of it for others. But Iâm happy it turned into something different, because I love sharing my heart with you. Letâs be real, we donât come to pheovsfabulous for the science đđ
Letâs walk through what the day looks like, and some practical tips to prepare!
Confidence comes from being prepared
First step, we drive 3 hours to get imaging, so youâre going to want to be comfortable. I said comfortable, not boring. Thereâs nothing boring about us, we need to feel cute! Look good feel good, am I right? Ladies AND gents!
Me, Gallium, and my âhospital bagâ
1. Choose your outfit, and make it a good one. Something that makes you feel like you can take on anything. An outfit that makes you feel POWER, and confident!
2. Prepare your hospital bag, yes, you need this! Even if your hospital is close by, you need to have certain essentials to get you through the day. Since my hospital is out of town, I always bring a small bag of toiletries just INCASE anything unexpected were to happen.
Medications, maybe a book, a good luck charm, lipgloss, you know, the essentials. I always bring my fighting pretty gloves for strength, and a stuffed animal for comfort. This time, I brought gallium. Heâs my scanner buddy. More importantly, your medical resume. This is your road map for emergency protocols, allergies, history. I show you how to create that here. If ever you were to have a reaction or go into crisis and couldnât speak, this is going to be their guide.
3. Create a playlist that pumps you up, gives you happy vibes, and passes the time. You can even listen to an encouraging podcast or whatever youâre into.
4. Prep food and drinks for your trip, takeout is hard when youâre following a low tyramine/histamine diet and allergic to nuts. This is a fasting MRI, so youâre going to be hangry. I suggest bringing at least protein bar to devour the moment youâre done the scan. We bring a small cooler and prepare for the day. We didnât used to do this and since we have, itâs made such a difference.
5. Pillows, blanket, neck pillow. Anything thatâs going to make your road smoother. If you experience chronic pain, sitting in the car for long periods can be tough. I always have a neck pillow in the car as a minimum.
6. Bring slippers! You will have to completely strip down and get into that sexy blue gown, and you donât want to have to shuffle around in the hospital paper booties too. So bring a pair of slippers to walk around in until your scan.
7. If you wear a wig, you will have to remove it during the scan. (Magnets) I like to bring a bandana or some sort of head covering to be comfortable before and during the imaging. I sometimes sweat quite a bit in reaction to the loud noises and vibrations, and I donât like coming out with my hair drenched. So I cover my natural hair with a bandana and it helps absorb some of the perspiration.
8. Speaking of noises and vibrations, this is something that bothers quite a few of us. You may want to speak to your doctor about taking something to relieve the anxiety or claustrophobia. Just make sure youâre able to stay awake, as thereâs work to do in there!
The MRI:
So now that weâre fully prepared, what should we expect for the MRI?
Our prayer ritual before the scan
You will check in, wait a little in the waiting room, I was allowed to be accompanied by my husband as he is my caregiver. With my conditions, I can need life saving care at any time. I canât go wandering around alone. If your condition requires special attention or sudden medication, tell them this at the door so that your caregiver can be present up until the actual scan.
âMiranda?â Your name will be called, and you will be escorted into the injection area. The hospital I went to was lovely and had a private bed to wait in. I appreciate these details with being in so much pain and fighting to keep my eyes open.
The gadolinium injection wonât take place until during the scan, so youâll need an IV placed. (Hydrate a lot before!) so that your veins will be ready.
The technician will insert the IV, and you will be asked to wait a bit until your turn to be scanned.
You will again be escorted into another room, this time where the MRI scanner lives.
(This is just a sample image to show the scanner)
The MRI is a big white tube, and yes, youâre going in head first. This is why I like to know what to expect, it makes you less nervous when prepared. You will lay on the hard narrow table, there will be a blanket underneath, and if they donât have a leg wedge set up, ask for one! Thank me later. You will want that elevation to take pressure off your back, the scan will most likely last at least 20 mins, mine was about 30.
They will place a large plastic contraption over the area thatâs being scanned, for me, that was my abdomen. This device will be what captures the images, and they will gently secure you to the table with some straps so you donât have to be worried about positioning.
Before sending you into the MRI, they will place some headphones on you. This will allow the technician to speak to you throughout the test, and you will also hear a voice prompt you when to breathe and when to hold your breath.
My technician was super kind and explained to me to listen to the voice as soon as she says to breathe in, GO. Donât wait until the instructions are finished, this was really helpful to me so that we didnât have to repeat the photos.
**Super important tip**
For me, I donât want to feel like Iâm in a tube. So I close my eyes before I go in. I never ever open them, that way I wonât panic. Everyone is different with this, my husband likes to keep his eyes open and then close when heâs ready. It depends if youâre claustrophobic.
Everyone will leave the room, and you will move into the machine. You will begin to hear the prompts almost right away, âtake a deep breath in, now hold your breathâ and you will have to hold for about 30 seconds. (I counted)
How do you stay calm during the scan
I practice guided meditations every day, and I learned breath work to calm my nervous system periodically throughout the day. This can all be done through YouTube, type âguided meditationâ and you will see a whole bunch of meditation types. Ranging from stress relief, sleep aids, ptsd healing, etc. Doing this on a daily basis allows me to stay calm during ongoing stressful circumstances. During the scan your mind will be used to travelling to your happy place, while still listening to the breathing instructions.
This is our favourite daily meditation
About half way through the scan, the gadolinium will be injected electronically into your IV. Like any contrast, you will feel the âwarm feelingâ. AKA you will feel like you just peed yourself. Itâs not AS aggressive as the iodine contrast during CT, but you do feel it. This is normal, donât panic! You didnât pee! I promise.
The hard part is over, kind of. You will be guided back into the injection room to have your IV removed, and you can be on your way. Go take care of your hanger, eat that protein bar, and drink LOTS of water to flush your kidneys of the dye. And I mean lots! Youâll feel better quicker.
Although the physical part is over⌠now the mental part is going to take its toll. Leading up to the scan, all that nervous energy you experienced, itâs going to be the opposite now.
You will most likely be drained, exhausted, mentally and physically. Itâs time to rest and recover. I slept a few hours the moment I got home, and Iâll be honest – experienced a lot of pain. Have your heating pad ready, and whatever you do to control your pain levels. As Iâm writing this Iâm still pretty stiff. For me, the noise and vibrations of the machine makes my body tense up. Leaving me feeling like I did an extreme an workout when the whole day is done.
Speaking only from my personal experience, once the scan is done, I feel too drained to worry about the results. I did enough of that leading up to it, now itâs time to just be and let be.
Worrying will not change the results, but it will make you feel like crap. As we all know, stress is the worst thing for our bodies with this disease.
So now itâs time to rest, and do something that really brings you peace. For me, itâs doing exactly this. Writing.
This is my therapy, helping others by sharing my experience.
âHarmonious self regulation is the bodyâs natural state, stress pulls you into another state, of heightened biological responses that triggers a flow of hormones, increased heart rate, stimulate the hyper-vigilance of the senses, and many other linked reactions. But these are all temporary, they are emergency responses onlyâ.
Letâs talk about this đđť I read this last night in one of my @chopra novels.
It actually hit me pretty hard. Although this is scientifically true, for someone who suffers with my disease, this response is NO longer a emergency response. It can happen anytime. Without warning â ď¸
On a normal day, I agree with that statement. To my core. I practice gratitude, inner self healing, I meditate, I let go of toxic feelings, i detox my life often of stress. So with that said…
Imagine your body being able to cause this stress response to ignite⌠WITHOUT the presence of a threat, or any type of apparent stress đ¤Ż
Pheochromocytoma tumors produce those stress hormones, the very ones heâs talking about.
Igniting the bodyâs natural response state to stress, except⌠Iâm stuck in that state, all the time. My neurologist recently described it as being chased by a wooly mammoth, the fear and stress response ignites (fight or flight) and then followed by saying âbut for you, the chasing never ends. Youâre always being chased, and your body can never restâ
We donât get the option. We donât have that basic human function to decide if we are happy or not đ our body decides for us.
I know some of you may not get this, you may be thinking âyou just need to do more inner work to find your true happinessâ. Itâs a normal response to something people canât possibly understand, which is why Iâm doing my best to explain it.
What Iâm getting at is that this is a physiological time bomb we carry around that decides chemically how weâre going to feel for a certain period of time. Itâs an actual sudden, rapid, release of stress hormones that put your body into a state of fight or flight.
That can manifest differently for some. If someoneâs untreated and undiagnosed, theyâll feel it normally as if theyâre suddenly going to die. Itâs not just an emotional response, itâs a physical reactive state where your blood pressure elevates, your heart rate suddenly increases, and that comes with symptoms like sudden brain squeezing headaches, shaking, intense nausea or vomiting, it truly is a physical assault from your own body.
For most, they have to adapt to it for a few months and then they get surgery. But me, weâre friends for life. Weâre in this till the end, me and Pheo. Pheo and I
Since Iâve done countless treatments, and am well managed with medications, I donât experience that type of physical intensity that often anymore. However, the emotional stress response is very friggin real.
I donât want to complicate this too much, but I also have comorbidities that create the same hormonal imbalance and sudden stress responses. Adrenal insufficiency, and mast cell activation syndrome. Iâm basically a little bomb of chemical reactions đ
So I thought itâd be a good time to just kind of touch on this subject since I donât talk about it very often.
Iâll use yesterday as an example, I rested all day, felt amazing, better than I had in quite some time, was so happy. I felt like my resting efforts were paying off. I had no stress surrounding my body. My husband and I had a much needed movie and rest day, the vibe was just perfect.
Around 10pm⌠it felt like a RAGE I bomb was igniting inside of me. It just hit me like a ton of bricks. I was scraping an avocado and suddenly felt like I was going to throw it at the wall. Get this, I was making avocado brownies. BROWNIES guys. If thereâs ever a time to feel happy and at peace… itâs when making brownies
For those of you reading this that donât have the disease, Imagine your worst PMS outburst youâve ever had, and multiply that 1000x – no warning, no control. Just a massive chemical response. And for men, just imagine your most reactive moment, any cause, and Multiply THAT, but keep in mind you have no control over it.
The panic, the anger, the rage, these are all stress hormones. And they come without permission or cause đ
Thatâs my best way to explain what living with pheochromocytoma feels like, and it only gets messier with comorbidities that create similar stress responses.
Last night, even after ten+ years of living with this disease, I was still surprised at the intensity of what I felt. It made no sense. Especially because it wasnât accompanied by the physical response I normally experience. It was purely emotional. To me, thereâs nothing worse than feeling out of control of my body.
I did everything right, and my body still betrayed me. It also feels like Iâm a broken record when I say âitâs not me, itâs my body! I canât control it!â
It FEELS like a load of BS, even I sometimes challenge whether or not thatâs true and I have the damn disease. So I canât imagine how hard it is for the people who love us that are in the war path when this happens. Thatâs the part I hate the most. Iâd give anything to be able to control myself at least when it comes to the people I love, Iâm sure anyone reading this knows the feeling Iâm talking about. The guilt you feel the moment you snap at your loved one about something that makes no sense. Brownies guys. I had an explosive response to making brownies. If it was just me and the brownies, I could have taken it, itâs when you react badly to your loved one. Itâs wounding in a way I canât quite explain. The heavy guilt that comes with it, especially as you utter the words âI canât control itâ …
Even if they know, they understand, and they love you regardless, it doesnât erase the feeling that I have when this happens. My husband is the most understanding person in my universe, he never takes offence, and he certainly doesnât make it worse. But … that doesnât change MY guilt, rational or not, it still sits heavy in my heart
Iâd do anything to be able to control my feelings, sometimes Iâd prefer the physical response rather than this irrational emotional eruption. Because then itâs just me that has to feel the wrath of my cancer when itâs physical. But then I remind myself, thatâs not true either. Your loved one still very much feels it.
And thatâs the worst part for me.
Pheo VS Fabulous
Whatâs your biggest struggle when it comes to living with this disease?
Iâm feeling very inspired lately, my urge to make a difference is strong.
I sometimes get an overwhelming feeling of responsibility to prevent what happened to me, from happening to someone else.
I know I canât save the world, I know I canât prevent every terminal diagnosis, misdiagnosis, and suffering.
Thatâs not going to stop me from trying.
Thereâs a number of things Iâve learned over the past year or so, my brain is more awake. Iâve come to realize there are so many important aspects of healing, and improving quality of life.
The issue started with the moment I was diagnosed with terminal illness, it was like my life became less important. That my life was no longer going to be about living, but dying.
I donât accept this view, this is why Iâm challenging the way terminal illness is viewed. Even by ourselves.
The purpose of this post was to share some specific points of my treatment and management journey, so that maybe someone whoâs living with metastatic pheochromocytoma or similar, can maybe take something from my experience. As we know, thereâs no cure. Only symptom management.
But as I write, itâs become more powerful than just a bullet point list of things that have helped me.
Treatment isnât a one size fits all, nor can it happen overnight.
Iâve suffered, Iâve triumphed, Iâve lost hope, regained hope, fought for my life, and continue to keep living. Really living. Iâve accepted that Iâll never ring a bell that tells the world âIâm cured!â
So Iâm going to share with you a recap of my treatment journey, and then Iâm going to expand into what Iâve learned about healing and improving my overall quality of life.
Feel free to get lost in the highlighted linked words and read detailed past experiences
Keep reading, it gets good.
October 2014– diagnosed with terminal metastatic pheochromocytoma after being misdiagnosed with anxiety for 4 years
November 2014– changed doctors and formed an entire medical team specializing in rare neuroendocrine tumors
I didnât know why, but I felt that overwhelming urge to share. To document. I wanted my misdiagnosis to have purpose. I wanted to be heard. I wanted it to matter.
April 2015– started my blog, sharing my experience, channeling my anger into helping others.
May 2015- first treatment effort: had a massive surgery to de-bulk the amount of disease
(I had over 50 tumors at this time)
November 2015- started losing my hair, no known reason at the time other than stress on the body, started to see more physical impact of the disease
Exactly one year later after my terminal diagnosis, I received another life changing diagnosis.
My remaining adrenal died. I was now going to be reliant on steroids to live for the remainder of my life. I was now adrenal insufficient.
Atleast this explained the hair loss and not being able to keep my eyes open for more than 30 seconds at a time. Problem solved.
Not quite… but more on that later
January 2016- happy new year! Just kidding, time for my introduction to specialized radiotherapy. This is not radiation, this is direct radioactive poison into your blood stream.
Things would move quickly now, my symptoms were out of control. They needed to intervene, and quickly. But thereâs a lot of prep to do for a serious procedure like this safely.
Within the first 20 days of January:
Bone marrow transplant: This was one of the most uncomfortable things I did, as far as pain. Who knew Iâd have to go through several procedures just to get ONE treatment? Itâs a stem cell transfer where you donate your bone marrow to yourself in case of failure after radiotherapy treatment. Itâs quite genius actually. I highly recommend doing this, because if your marrow fails, you need to find a transplant match. In my case, it was just waiting for me on ice in a special vault. Cool, right?
pharmaceutical blockade: preparing my body for the extreme dose of poison. Trying to get my vitals to a low level so that when my tumors explode adrenaline during treatment, I wonât die.
Complications: my thyroid stopped working. More medication for life. But atleast I wonât keep suffering from all those weird unexplained symptoms, right? Wrong, my adrenal insufficiency would continuously be an issue with all of the stress on my body, I could never get enough cortisol. I was burning it too quickly, my body was too stressed from all of the prep, I hadnât even done the treatment yet.
Well now that Iâm ready for MIBG, itâs time to administer the treatment.
January 20th: 3:30pm-5:30pm I became a medical experiment, a spectacle. One of the first to undergo such a treatment at the hospital for this disease. A scary, and confusing time for everyone involved. You can read about my experience here
All better. Just kidding, I actually felt a lot worse. I was in so much pain, and I couldnât get my attacks under control. The MIBG treatment actually set off my tumors more, so I was suffering greatly. I was praying every day for a moment of reprieve. I thought Iâd never see a good day again. I didnât know what it felt like to be normal anymore. I just knew pain.
March 2016– âI donât know what to do next…â this is not something you want to hear from your highly specialized doctor. But even the best doctors become perplexed when it comes to such a rare disease. Especially when itâs not cooperating. At all. It was just getting worse. It would be a bit of time before Iâd get the official round of data compiled to know whether or not it had worked. Letâs stay hopeful
May 2016- it had kind of made a difference, but the results were âdisappointingâ. Great. Now what do we do? More tests of course.
June 2016– test month. Sooo many tests. So much travel. We are exhausted đ˘
July 2016- it canât get worse? Can it? Until it did. Chemo is being discussed. No no no, chemo is the last option. Thatâs what I was told in the beginning and it never left my mind. âChemo is only something we do when thereâs nothing left, itâs not a very effective option for this type of cancerâ. So why are we doing it now?! Itâs not the end. Iâll keep fighting. I promise! Iâll do anything.
Too bad, itâs time to introduce another team member: an oncologist.
July 27 2016- the oncologist. I actually really liked him, I still do. Heâs an essential part of my team. Every mind is better than one. But I didnât agree with his ideas at the time. I did NOT want to chemo, I did however that day learn about immunotherapy, TK inhibitor therapies, and so much more.
August 2016: new plan. I want PRRT. I heard about it from a support group, yes thatâs right. A potential radiotherapy experimental treatment I was betting my future on, I heard from another thriver. See the importance of sharing? So we pushed heavily for this treatment, but it was still in clinical trial phase, oh boy. Iâd need to meet a lot of requirements, only 50 people were being accepted.. only 4 places in the world were doing it.. ok my odds arenât looking great.
You havenât met doctor cupcakes.
Within 24 hours I was accepted into the testing for the clinical trial. My husband is a miracle worker, or he just really loves me. This is only part 1, a highly specialized scan that can look at the tumors at a cellular level. This was considered the gold standard. I wanted it, I needed it. I was getting it!
Hereâs the thing with the scan, itâs not like a regular CT scan or MRI. These types of scans are specific to neuroendocrine tumors like mine. It wonât pick up a regular cancer. It also requires your tumors to be receptive. Still following me?
In order for your tumors to light up on the scan, a gallium scan is designed to be highly sensitive to somatostatin receptors. If your tumors donât have this, they wonât light up. And you canât get the PRRT treatment.
Lucky for me… my tumors lit up like a Christmas tree.
Accepted!
Isnât it weird you can be excited to see an abundance of tumors on a scan? This disease is weird.
Iâm getting tired, so please read about my PRRT experience here. In one year I did 3 super high doses of radiotherapy, different treatments entirely, and so many tests your head would literally spin.
January 2017- I still needed 2 more rounds of PRRT. It was so hard on me. It seemed like I had every side effect possible. My experience wasnât going as smoothly as others. I kept wondering đ why do I always have it so much worse? Am I weaker? Do I just complain more? No, it canât be. This is too much.
Fast forward âŠ
I had completed the 2 more rounds of PRRT. I had such high hopes. It was getting more difficult to live, to function, stairs were impossible, I was living in the main room of my house, in a hospital bed. My life was very different now.
We sold our home, I moved into my dream condo. No stairs, open concept, cozy, peaceful view, everything I ever wanted to be comfortable and continue to find a way to live with this disease. You have to find ways to adapt. This was ours.
November 2017- I spent my first night on my new condo, I slept beside my husband for the first time in months. Since the bedroom was accessible now.
I received a phone call, unknown caller. I always know thatâs bad news. Itâs the hospital.
âCan no longer participate in the clinical trial…â
âTumors not responding…â
âPalliative care…â
âJust keep her comfortableâ
This is what I remember. Iâm sure there was a lot more to it. But what I took from it, Iâm dying. Iâm being told this is the end of my road over the phone. Thereâs no more hope. I politely asked my husband and my mom to give me some time to myself. I locked myself in my room. This seemed like another moment I should document. I felt I should grieve privately, but my heart was telling me I should share my raw feelings and reaction. I thought of all the other people who had been in this situation, and I felt that urge to share again. It was bigger than me. So I filmed my initial thoughts.
Palliative– I went down a very confusing road, it all seemed to blur together. The only time I got out was to go to hospital appts. I could barely make it to the bathroom alone. My home care team always wanted to talk about âmy wishesâ. My wish is to live, for as long as possible. My wish is to not talk about dying. But thatâs apparently not an appropriate wish when youâre palliative.
Unbelievable things started happening.. I started to realize what it really was like the moment your status changes to âpalliativeâ
Youâre seen differently. You no longer get the same options. Your life becomes about dying. When to die. How to die. Where to die.
It was when I was kicked out of my local hospital for refusing to sign a DNR (do not resuscitate) that I realized… Iâm in trouble. This is no joke. I need to get better, I need to show them! Iâm still here, Iâm not dying, I have so much life in me, please listen!
My husband and I started to feel very overwhelmed and for the first time… unsafe. Unsettled. We no longer felt protected. Nothing made sense. He would keep me alive with breathing machines we bought ourself, to treat my pneumonia at home.
We clung to each other, we held onto our last shreds of hope, we would lay down in my twin sized hospital bed that made its way back into my living room. We would hold each other so damn tight, as if Iâd disappear if he let go, the tears falling on one another, reminding us that Iâm still alive. Iâm still here. You can feel me. My heart is beating against yours, my tears are warm, only he could see it.
Everyone else was giving up on me.
The trauma we went through during this period… itâs indescribable. So much happened. Iâm not going to go into it, you can choose to look further into my blog, but this post isnât for that.
My pain was out of control, despite âkeeping me comfortableâ, home care was unable to get my pain under control. My medications kept increasing, the pain would get worse.
Any time we would call for advise, theyâd say to give more medication. Get me out of pain. The cycle would repeat, and Iâd be in more pain.
What is happening? Is this what dying feels like? Youâre just in a constant state of pain? I thought it was supposed to be comfortable.
Maybe I wasnât ready to die
I will quote myself from a previous blog entry:
âAs my limbs become so weak I can no longer walk around, touch becomes unbearable, my speech is becoming more strained, my brain becoming mush. The pain is excruciating. My doses become even more frequentâ
âSo tired. So so tiredâ
âAs my breath becomes more and more painful, more shallow, harder to gasp for air, my skin begins to heat up so much that it starts to fall off. Why is this happening? It has to be the cancer. Time for more medicationâ
âMiranda is having a lot of breathing troubles, what do I do??â
âSheâs unable to walk or and can barely form a sentence, sheâs passing out ALL the time, canât keep her eyes open! What do I do??â
More medication.
November 2018- if we werenât going to get the proper help locally, it was time to get me to my super doctors. The ones who kept me alive before all of this palliative care nonsense. If my husband had to carry me on his shoulders to the car, he would have. Luckily I had a wheelchair. We drove to Montreal, I was admitted immediately. No one could figure out why I was so damn sick. Why I was in so much pain. How could I be on so much pain controlling medication, but be suffering THIS much? I was a medical mystery, sometimes a zebra is a unicorn.
Every.single.day was a guessing game, whatâs wrong with Miranda?
I will quote myself again from a previous blog post …
âThe one thing I knew so far: every nurse, doctor, and specialist could not believe how much pain medication I was taking. Some didnât even want to administer it. I was getting worried, itâs the one thing that gives me relief, why are they so against it?â
âMy nurse, we will call her Angel, she outright said to Serge that the medication is whatâs causing all of my pain. She said that some people react differently to opioids, and that not everything meant to help you is going to. Sometimes it can be the problem, and you can have a reverse effect. Just like that, mind blownâ
âBut it canât be that. I have cancer, itâs whatâs causing my pain. Iâm dying. They told me. All my doctors told me. Thatâs what everyone has been saying for years now, take more medication to be comfortableâ
I was so angry at Nurse Angel, what did she know? Medication, bullshit
Fast forward two months in the hospital đĽ
It was my medication, kind of. What no one knew at this time was that I had suspected mast cell disease. Even as Iâm writing this I am not officially diagnosed but being actively treated.
Since the very beginning, the unknown sensitivity to treatment, to chemicals, my amplified side effects, my heightened symptoms, the unexplained pain, the inability to breathe, the declining unexplained health… it all makes sense suddenly
My master cells were being attacked by the disease, causing them to be broken. High levels of mast cells mediators were being released into my system, similar to my tumors, bursting chemicals into my system that make you flare up into extreme reactions.
The pain medication was making everything worse, since it was making the mast cell flares worse and more frequent. It was just a vicious cycle that wouldnât end.
Until we fought like hell for answers. Until we demanded that I wouldnât die like this. Until we changed the narrative. We saved my life. You can read about that part here
The funny part? I wouldnât have known about mast cell disease had it not been for another patient/friend/advocate. I was too sick and confused to understand it at the time. So I didnât push for answers.
I accepted that it was the medication causing it, and I moved on.
It would be an incredibly long road of healing, it still is.
Healing – we moved away, we moved to the city that saved me. We wanted to be close to the hospital that saved my life. We wanted to feel safe. So we left our friends and family, took our life savings, and we moved to what I imagined would be my âretirement homeâ. I still thought I was going to die soon, but I was happy to do it in peace. Without pain. With a clear mind.
But thatâs not what happened is it?
I started walking to the elevator, using my legs, my muscles had completely died at this point. So I walked little steps every day. I finally made it to the door of my building. Then outside to the street. Then around the block. Then down to the water.
My body was healing, it was slowly recovering from all of the trauma. I was reconnecting with myself. We were finally able to take a breath.
Remember that moment when I started writing this, when I said I never thought Iâd have a moment of reprieve? Well I did. I finally experienced it that day I made it to the water.
My mind was next, I was healing physically, but now I needed to heal mentally. We both did. We had gone through so much, how do you come back from that?
I was unable to share for quite some time during this period, I lost my ability to share my story.
The minute I got my voice back, I started sharing slowly, cautiously. I didnât know what to say. I didnât understand it myself.
I didnât understand how this could happen to me. How something could go so wrong. How I could be so close to death… but be so alive. I could have died because of a lack of knowledge.
I donât like to blame, itâs not healthy for my mental well being. The lack of knowledge that exists is not a fault of anyone, itâs a flaw in our medical system that exists because of the rareness of this disease. Itâs not fair, but itâs real.
Why do I share? Because itâs going to educate whoever reads this.
Itâs going to push boundaries of the rules we are supposed to follow. We are supposed to be good patients and accept our fate.
Well Iâm reclaiming my power, Iâm slowly every day working on myself mentally and physically.
Iâm doing things that bring me joy, Iâm sharing things that make others aware, Iâm connecting with who Iâve always been, Iâm learning why I started this blog in the first place.
It wasnât a choice, it was my purpose, it was a promise.
I promised I wouldnât let this cancer take my fabulous, âFabulous is your light, your smile, your energy, your positivity, your willfulness, your vitality, passion, excitement, beauty, laugh, and how you share it!â â
What youâre about to read is the very first statement I made when I started this blog. The blog that changed my life and so many others.
âThis is my very first post, my first time writing a blog, and my first time speaking freely about my personal journey with pheochromocytoma cancerâŚ. and staying fabulous while doing it!
Pheo VS Fabulous was born from the promise that I would never let this disease take away the one thing I could control, and Iâve labeled that my fabulous. When I became ill I realized how much we take for granted, and it started with how day to day tasks are so challenging when youâre battling an illness like pheochromocytoma cancer, thatâs when I decided I wouldnât let it that away from me. Itâs more than just looking a certain way, itâs about BEING fabulous, strong, and positive when you have every reason not to be.
The danger of something being so rare is that it goes undetected, unrecognized, and is one of the most misdiagnosed conditions. Leaving many of us undiagnosed, and looking for answers.
If youâre reading this, you might still be looking for someâŚ
My goal is through sharing my vulnerabilities with all of you, finding the courage to share something so painfully personal, someone else may have less of a challenge in the future of being diagnosed, treated, and living with this disease, #pheochromocytoma â or any other âneuroendocrine cancers. #netcancer #raredisease
The idea is that the more I share, the more information there will be available for a disease where this is so much lacking. Every procedure, every test, every treatment I will suffer through â I will continue to share my experiences so that others donât have to keep grasping for answers like I did.
Although there is so much to cover⌠first off, pheo-chromo-cy-whatta?! We will get there darlings, I just want to sayâŚ
This blog is meant for awareness:
Awareness for a disease that only a handful of people in this massive universe know about, probably only because they were diagnosedâ
Isnât that incredible? I told you, it was my purpose. Before I even knew what was I was talking about, why I was saying it, and what it would mean. I knew.
NOW – Iâm finally in a place where I feel things are improved and better controlled. I have good days, I never thought Iâd say that.
I think the most important aspect is treating comorbidity, if you have other illnesses going on, and theyâre not being treated as effectively or focused on as much as the main cancer, the issue is it exhausts the nervous system and keeps triggering the Pheo episodes. Everything from the adrenals, the thyroid, mast cells, anything that can be impacted, make sure itâs being properly treated. Even my endometriosis finally being diagnosed and treated has helped, because it took so much pain and stress off my body. Pheo is so triggered by stress, so the more stress we can eliminate from our bodies physically, the better quality of life we will have.
I started this blog post wanted to share a bullet point list of what has helped me, my meds, my treatments, but I think my heart needed to share, and my soul needed to be emptied of everything Iâve been holding onto.
I started this entry by saying I sometimes get an overwhelming feeling of responsibility to prevent what happened to me, from happening to someone else. So now Iâve shared everything I possibly can to do that. Even after Iâm gone, my story and my information will remain available forever.
I will continue to share, every experience, every new piece of the puzzle, but most of all… Iâll continue to share why I have hope.
We canât heal until we are treated, so hopefully this will help you begin your journey for better treatment. I truly hope you will be able to feel that moment of reprieve I described.
I still have bad days, but more importantly… I have goood days!
I still have attacks almost every day, and mast cell flares, but I live with hope, happiness, faith, love, and I control what I can. I no longer live in fear, I am in control, I decide.
I live with a new mindset, I see clearly, I live purposefully, and I remember who I am.
More importantly, I want to help you do the same. Thatâs my purpose.
The rest is out of my hands, the rest i cope with. The rest I made peace with.
My terminal cancer and I live in peace with one another.
If you had asked me six years ago what I was going to write in 2021 on rare disease day, Iâd have told you I wouldnât be here to share.
Iâd have told you what they told me, I maybe have a year left.
Iâm writing this to explain specifically the importance of rare disease awareness, not just a day, but every day of my life. Iâve dedicated every ounce of energy I have into sharing my journey, the ups, the downs, the discoveries. In hopes that someone would learn something from my experience.
Iâve always been a dreamer, but this was much bigger. Before I even really understood the impact of awareness, I truly believed that if I shared enough… I could make a difference. The type of difference that could prevent someone from hearing the words âitâs too late, itâs now terminalâ. Like we did.
I believed deep in my soul that if I shared enough, I would finally be heard. Someone who needed it would hear me, fate would allow them to gain the knowledge they needed to push for a diagnosis.
I wasnât even considering the fact that my experience could potentially better inform healthcare workers, and trickle down… creating a knowledge that would never be heard unless experienced by people like me living with the disease.
My first pheochromocytoma was missed because of a lack of knowledge about the disease, it wasnât the fact that it was too rare to be considered, it just simply wasnât thought of at all.
My second was different, the knowledge was there, but it was considered too rare to come back. It was overlooked because of the odds. The literature didnât support what I was experiencing, so it couldnât possibly be that.
Four years after my first one, I was finally diagnosed with a recurrence. It was misdiagnosed for too long, it spread all over. Itâs terminal. I was told Iâd have 1-5 years to live max, âbased on the literature availableâ. The literature, the incredibly vague and unreliable literature. So little to reference and gain the knowledge needed to empower the patient or even the doctor.
This is when we realized it would become vital to my outcome for us to learn for ourselves. We had to take control of my situation, we had to look for the most knowledgeable doctor to treat me.
We didnât want to accept my odds. So we started down a new path of self advocacy, learning, and sharing.
I started my blog, documented every treatment, feeling, reaction, change, anything.
I figured, if Iâm going to die, I want to leave behind the gift of information. I wanted to re-write the literature. There was such a gap of information at that time, I wanted to help fill a small part of it.
As I shared, I started to connect with more and more people. I was learning more every day. So I kept sharing what I learned.
This new wealth of information would impact my treatment decisions, my ability to strongly advocate for myself, and be part of all decisions regarding my health.
Thatâs the thing with awareness for rare disease, itâs not just a cute buzz word. Itâs life changing. The information we received from others was what kept me alive. Itâs what allowed me to bring up my own suggestions, and avoid doing things I knew wouldnât work for my situation.
Each new step of my journey, I would share with others, and the cycle would continue. The wealth of information and knowledge keeps growing, and we keep changing outcomes. We keep improving quality of life, and we help healthcare professionals better understand us. Leading to proper care and diagnosis.
Of course I can dream so big that if we become less rare… it can lead to a cure. And yes, it can. One day.
But for right now, Iâm focusing on preventing it from getting to my stage in the first place. Where itâs incurable. If we can share enough, if we can continue to become less rare, it will be diagnosed earlier and able to be treated.
For those of us who are past that stage, like me, becoming less rare means proper treatment protocols, better treatment options, symptom management, improved quality of life, and the knowledge to be treated effectively in emergency situations. I canât tell you how many times Iâve been asked…
âwell what do YOU normally do when this happens?â
The knowledge we share will continue to educate all parties involved, making situations like this happen far less often.
I actually never dreamed of a day where Iâd hear âbecause of your blogâ…..
Thatâs the power of sharing, the impact of awareness.
It shouldnât fall entirely on the patient, but our experiences are how we all continue to learn.
I am still here today because of knowledge, because of awareness. Plain and simple.
Each new mind that hears the word âpheochromocytomaâ, has the ability to share that with someone else, and so on. You can never know how this will impact the person hearing it.
So keep sharing while you can.
I know I will.
The most suffering I ever experienced was not being able to use my voice. Not having the ability to share.
I hope you will help me continue to share my message, my story, my journey, my experience, and my dream.
Pheo VS Fabulous đ¤đŚ
Sending you unicorn kisses, love, and pixie dustâ¨
Five years ago it took getting diagnosed with cancer to make me wake up and see things for what they really were.
The uncertainty youâre feeling right now? I felt that everyday. I still feel it, but Iâve learned to adapt to it. Iâve learned to live amongst it.
This is your wake up call.
The feelings you have right now, theyâre valid. The fear, the anxiety, the grief, itâs all real. But what will you do with it? Let it overcome you and wither away? Or learn to adapt and thrive in these uncertain times.
We will all eventually face a time in our lives where everything is turned upside down, we no longer know where we fit, what will happen, and how to deal with it. Let this be the time that you figure out how. Let this be the time where you figure out how to just âbeâ.
Five years ago I was abruptly forced to turn my life upside down. I was forced to give up the life I was used to living, I was forced to grieve the old me.
I had to make fast and hard changes, I had to give up working suddenly. I had to apply for long term disability, give up my day to day schedule, and become isolated from the world without a choice in the matter.
I know how you feel, being told you canât work, having to apply for EI, not knowing when you can resume your normal day to day.
Social distancing didnât have a term then, it just happened naturally. This was my new life, my new reality.
Yes, Iâm trying to give you a wake up call. But in the most respectful, understanding, and empathic way. I get you, I feel you, I understand so much of what youâre going through. I want to help you navigate through the uncertainty youâre feeling. Not judge you for how you feel.
That feeling of helplessness because you donât know whatâs in store for your future? The feeling of impending doom that you cant shake? Itâs normal. I felt that way too. I too have had to cancel my future, I too have sat lost and scared about whatâs to come. I too have felt out of control about the unknown that lies ahead.
So what can we do to conquer it? Youâre sitting at home, pacing back and fourth, scrolling through your social media, unable to control the panic.
Let me ask you this, when you had your âlife in orderâ and things were ânormalâ, what were the things you longed to do? How many times did you wish you could just shut the world out and connect with yourself? Let this be the time you ask yourself who you really are.
Let this be the time that you appreciate the monotony of your days.
Let this be the time that you tell your loved ones how you feel about them, and reach out to the people who you havenât told in some time.
Let this be the time you just slow down the pace, take a breath, enjoy.
Donât let fear and panic take over your life, but be respectful and aware of whatâs happening around you.
This IS life changing, this IS scary, but it can also be therapeutic and life changing in a positive way.
We need to learn how to see joy and embrace our circumstances.
What have I done in the last few years during self isolation?
The time youâve wanted to spend with your loved ones? Soak it up!
The book youâve wanted to read? Read it.
The nextflix series you didnât have time to watch? Watch it.
The novel youâve always wanted to write? Write it.
The naps youâve longed to take when you were exhausted? Sleep your heart out!
That exercise regimen you always want to start? Do it now.
The FaceTime calls youâve put off cause you were too busy? Start calling up your distant friends.
The sunrise and sunsets you always missed? Enjoy them.
The complicated meals you never had the time or energy to cook? Start cooking!
The trail you always drive by and always say âI wanna go walk there sometime soonâ, go explore!
The bath salts you always buy and never have time to use? Go soak!
Meditate, meditate, meditate! Learn how to calm your mind. It wonât just help you during this time, it will help you when all of this is over.
Learn how to face fearful situations and not succumb to that fear. Learn to be your best self, the person you never even knew you wanted to be.
Explore who you are, get to know âwho I amâ again.
After all… you have nothing but time.
Something that not all of us have the luxury of saying. Time is something that some of us want so badly, and yearn for more of every single minute of every single day. Use your time wisely, because one day… all of that âextra timeâ youâre complaining about having, could be gone.
And last but not least… just be thankful. Thankful for your health, the time you have, the friends who love you, the family who you love, your freedom. Be thankful for those who are sacrificing every day for you to have these things.
You will be sitting at home, pacing back and fourth, scrolling through your social media, but the difference? You will be able to conquer the fear of uncertainty, you will know how to deal with it head on, because you will know exactly who you are and what you wanted out of life, and you wonât let anything or anyone take THAT away from you.
Iâm no stranger to treatments and procedures, thatâs the understatement of the century! However, getting something done because I WANT IT done, thatâs a new concept as of late.
When youâre sick, your body becomes sort of …everyoneâs. It doesnât feel like your own anymore, a product of the medical field.
Well Iâm taking my body back, and Iâm loving it.
Pheo VS Fabulous was built around the statement of staying fabulous throughout it all, never losing my joy. Well I think Iâve taken that in stride, but it gets difficult. Itâs about time I can take back some of my fab. So Iâm doing that in every way possible. Physically and mentally.
Have you ever heard the expression, âI woke up like thisâ?
When you have an illness, it takes a toll on you. It takes a huge mental toll, and that turns into a physical toll. We often just stop doing things for ourselves because everything is so damn hard. We do things out of convenience a lot, and stop doing things because theyâre enjoyable and we WANT to.
This may sound crazy, but any time I go into see the doctor, or am surprised by the fact that I have to go in an ambulance, I always think first … âhow do I look?â I HATE looking sick. I feel like the moment my illness takes over my physical appearance, itâs won. Iâve lost that one part I can control.
When I was SUPER sick, (bedridden) I did EVERYTHING possible to stay me. My hospital table was a makeup table, my slippers were cute, my pjs were always matching, I got my husband to do my hair. It was just important that I didnât lose myself completely.
Now that Iâm feeling better… I wanted to treat myself to a few things that could make this job a little easier in those times. When Iâm too sick to do anything at all, but I still wanna wake up looking absolutely fabulous!
Operation lashes and brows commence!
I know I know, Iâll be the first one to admit… Iâm a bit extra! đ Iâm okay with that. Not everyone is going to feel the same way as me about these things, but I guarantee you youâd enjoy them just as much!
So first, I started with something practical. My eyebrows. The defining feature of the face. I was always extremely intimidated by eyebrow procedures because … letâs be honest, someone semi permanently changing the look of your face? Scary! Thatâs why you have to do your homework, and know what you want. Iâd heard of microblading, a procedure where they take a hand tool and semi permanently tattoo your eyebrows in a natural way to give you the illusion of perfect brows at all times. However, it wasnât until Iâd discovered dolly lash lounge, and started researching other ways of achieving this apparent greatness, that Iâd heard of ombrĂŠ brows.
I would spend so much time filling in my brows with makeup, pomades, powders, gels, anything to make my brows look and feel great. Even if I didnât do anything else to my face, I always did my brows. It was just a thing I had to do. It takes time though, and a lot of different products to achieve that perfect look. What we millennials would call the âInstagramâ brow. Ha!
OmbrĂŠ shading is a procedure using a machine vs by hand, and itâs semi permanent up to a year or more. It gives you the illusion that youâve masterfully filled in your brows to perfection, except itâs always done! It looks extremely natural, depending on how dramatic you go, and itâs amazing to wake up to all the time.
Appointment time: 2-2 1/2hours
Once youâre done with the consultation, filling out the necessary medical forms, and having the actual procedure done.
I found it fairly painless, but again… this goes back to having done my research and making sure I went to a QUALITY place! I scoured their pictures on social media, read their website up and down, and looked for reviews to make sure I was getting the best of the best.
You lay down on a comfy bed, your lash/brow technician preps the area with numbing cream, (be sure to check what they use and be conscious of any allergies)! and then they start mapping out your new brows! My eyebrows were extremely sparse and uneven, so there was a lot of work to be done. When she first showed me what they were GOING to look like, I wanted to cry. I was so happy! So we went to work, and 2 hours later…. perfect brows đđź
Just a side note, Katie was extremely gentle, professional, we talked so much glam, and I had the best time ever. It helps to be comfortable with the person youâre doing it with, so keep that in mind when youâre booking with a salon!
This is the first time I had to lay down for hours on end and actually have a fun result at the end instead of just a scan that showed my tumors, so I was pretty ecstatic!
Here is the first result:
So this was my first session, you can see I am red because of the procedure but they healed perfect and I love them so much! (I’m also extremely sensitive so this is normal) Your eyebrows will initially go a bit darker with oxidization, but that goes away after one week and they heal to the color your specialist custom makes for you. You have to go in once more after this a few weeks later for a touch up, it allows you to make any changes or go a bit more dramatic if you feel the need!
Mine is coming up soon, but I love my brows even as they are now. Iâll do a bit of work touching them up to darken them a bit, but other than that .. love!
Lashes…
Now, Iâm a person that actually enjoys wearing false lashes in my spare time. Haha! But itâs so much work and money. Doing false lashes when you can barely sit to do your makeup in the first place… itâs a bit much.
So when I heard I could have lashes that were voluminous and beautiful ALL the time, I had to have this. Never glueing on a falsie again? Sold.
Iâm sure youâve heard of this, thereâs all different sorts of eyelash extensions you can get. âNatural, hybrid, volume, super volumeâ
Well I wanted EXTRA volume. Go big or go home!
I went back to my technician and told her I wanted to be ultra glam, all the time. Hit me up with the biggest lashes youâve got!
This is the first time Iâve been able to feel well enough to partake in these adventures, so I might as well go all out! âşď¸
(And looking like Iâve done a face of makeup without actually lifting a finger… yeah, tempting!!!)
So I took the plunge.
Appointment time: 2 hours
Each lash is masterfully added to your own ONE BY ONE, by hand. Itâs actually pretty crazy when you think about it. Iâve never seen such patience and precision. Of course, there are differences everywhere you go, but this was my experience.
I was pretty tired by the end of it, but it was worth it. Katie was also excellent at allowing me to have a break if I needed it, and overall I just felt super comfortable.
This is the end result! Again, my eyes are a bit red because of having them closed for so long so you tear up a bit, but I assure you theyâre fab fab fab! Perfection.
I will link the website of where I got mine done, www.dollylashlounge.com so you can read yourself through the procedures and services list. I thought it would be more fun to hear it from me đ
I told you guys Iâd bring you along on my journey, and this is part of it.
Right now Iâm all about taking back my fab. Thank you dolly lash for helping me do that.
And thank YOU GUYS for following along with all my crazy but fun ideas! I hope Iâve inspired you to do something fun and kind for yourself, because letâs face it… we all need a bit of love now and again. Why not let it be from you? #selflove
Support comes in all forms when you receive a diagnosis, but as you become sicker and the âold youâ starts fading away, so do your relationships.
So many people want to be there for you when you first receive your diagnosis, but as you become sicker, when it all becomes real, it seems you start losing people one by one. Thereâs nothing worse than having to grieve your old self, plus have to mourn each relationship lost as you go.
One day you wake up, and all of a sudden you feel like you have no one left.
‘Hanging out’ and visits turn into text messages, the text messages turn into the occasional Facebook chat, and then even those just stop abruptly. Until thereâs no more communication. Everyone just went away...
You canât help but blame yourself,
if I wasnât this sick, Iâd still have friends.
If I was healthy and could have a normal conversation about monotonous things, I wouldnât push people away.
If only I could be healthy and not intimidate people who are unsure how to approach this new âsickâ me.
If only I wasnât intimidated by them thinking about me being sick, and could fill in the awkward silences.
…If only I could erase all the sad eyes, the weakened expressions, and not have people who once respected me feel sorry for me.
This is the worst part, the pity.
If only these people knew that Iâm the exact same person, the same person who was their friend for all those years. The same family member, the very same.
People change regardless of being ill, but it seems being ill puts a wedge in between the healthy and the sick. The unknown is often just too much. If I changed because I became an asshole Iâd understand, but Iâm the very same person.
This is the first time Iâve ever expressed how much it hurts.
How at my sickest Iâve never been so alone.
When someone says, âyou must have a lot of people around you!â And you just donât know how to respond.
How I donât want to come off as ungrateful or selfish because there are some amazing people who have come into my life despite me being sick.
But those relationships lost still weigh heavily on my heart, and I wish I could have every single one back. Back to normal.
But Iâll never be normal.
So it shall remain…
What I will say is Iâve learned a few things while these relationships have come and gone.
Itâs not your fault, even though it may feel like it is, stop blaming yourself.
Often people want to be there, they just donât know how.
Itâs exhausting trying to make others feel comfortable around you, focus on yourself being comfortable and the rest will follow.
Itâs not your job to put everyone else at ease, if they are your friend, they will try to find a way to understand your new situation.
People who are truly your friend, WANT to know how you are. They donât want the sugar coated answer, be honest with your friends.
Your best friends donât mind changing plans, or understand when you canât make it because youâre not feeling up to it suddenly.
Your best friends will make an effort to make YOU comfortable in this new changing circumstance, theyâll go out of their way to make sure you have a place to lay down in their home if you get tired, or have a fan handy for when you get too warm etc.
The people you lost were probably not meant to be close to you in the first place.
Donât feel bad for making the decision to cut out toxic relationships, even though you might feel like you canât afford to lose anyone else, itâs not worth putting yourself through hell to have âfriendsâ.
Donât take for granted the people who did stay around, know that they love you so much, and cherish them every day.
Five years ago I was told I had 1-5 years to live. I sat in a white office with the same diabetes posters and bland medical facts I had looked at several times, and contemplated how angry I was. Angry because had I not been so ‘rare’, something might be different. Perhaps someone might have listened to me, instead of blaming my symptoms on anxiety. This was the worst day of my life.
If someone had just listened to me while I complained of symptoms for years, I would not be sitting here listening to how I had 18 tumors that metastasized all over my organs, and were now killing me at an aggressive rate.
I left the office that day SO angry, but that anger turned into determination. The fiercest determination I could have ever felt, I was not going to die because I wasn’t heard.
I would be heard.
For the last five years, I’ve been heard. I may have suffered along the way, I may have had to do every form of treatment possible, but I’ve been heard.
Not accepting my fate was one of the best decisions I could have made, even after countless disappointments and setbacks, despite being told again and again mountains of bad news, I didn’t give up.
We didn’t give up.
I have news …
Today I sat in a white office, waiting to see my oncologist to hear an update of my cancer progression. For the first time in the last five years, I held onto the hope I felt countless times, and waited for news.
It’s always bad news …
Not this time.
Today, for the first time since my diagnosis, I was told I was stable.
Stable …
There’s no cure for the cancer I have, not at this stage. I was given palliative care, and supposed to await death. I was sent away to die at 24 years old.
I didn’t accept that, I fought. Hard.
Now I’m stable!!! DO YOU KNOW WHAT THIS MEANS?
Stable means that for now I don’t have to continue treatment, I can take a break. Stable means I don’t have to go do any more scans for 6 whole months, 6 months! Stable means I can be in less pain, it means less attacks.
It means hope...
I’m writing this with tears in my eyes, because when I started this journey I just wanted to make a difference in as many peoples lives possible. To prevent suffering like mine. Today I feel that I can finally GIVE hope, the hope I’ve been clinging to so hard for the last few years.
Many of you have followed my journey from the beginning, clinging onto that hope just as hard. I’m finally able to tell you that I have good news, and it feels incredible.
If you’re reading this and you’re going through treatment, if you’re in pain, if you’re suffering, if you’ve just received your diagnosis, wherever you are in your journey… just know that I’ve been there.
Now I’m here.
It’s an amazing thing.
My life will never be normal, and I’m certainly not cured, but this is the first time I can say that I’m able to breathe a little. I don’t have to plan my life around what treatment is next, wondering if it will work, or what side effects it will have. I can just live. For now, I can breathe again.
If you’d like to see more of my journey, and learn about what treatments I’ve done… take a look around my blog. My most recent treatment plan was PRRT, although scary, it definitely made a difference in my condition.
Not giving up saved my life, being heard by the best of doctors for this condition… changed everything.
Never, ever, give up.
Hope is the hardest thing to have, but it’s worth it.
Five years ago, October 10th, I was told I had 1-5 years to live.
I remember sitting there, so full of hate and anger. Thinking to myself, “if they had just listened to me, I wouldn’t be here”
It took me a long time to push past this, and focus on what’s important. Living
We often forget when we’re fighting for our lives, that we have to still live our lives. What are we fighting for? To live. But each day that passes and we forget that, we are missing the opportunity to just enjoy and embrace the moments we are given.
I’ll never forget anymore, what I’m fighting for.
I beat the odds, I am a miracle.
It’s so hard to think about the fact that someone gave me a death sentence, but now all I can see is how I’m so full of hope, more than I’ve ever been.
I’ve learned so much throughout this journey, but what I take away from it the most is…. you HAVE to fight.
Fight with every piece of your heart, your soul, your mind, your body, it takes every part of you to fight this. It can be done, and it can be won. Despite being told you’re living with an incurable illness, and some day you will die, there’s still so many days we are fighting for and can live such a beautiful life if you allow it.
I didn’t get here by rolling over, I have done EVERY possible treatment, clinical trial, diet, physio, I have been challenged so much mentally and physically. I have been poked and prodded, had my dignity ripped away, but I’m here and I’m so happy to say that I’m alive.
Although I have no actual news to report as far as a medical update, (that will come soon)… somehow I just KNOW I’m doing better. My hope reaches so far that I just know how I feel, and that feeling is pretty damn good. Once I get my results, hopefully we will be able to back up that feeling with some actual numbers and a better outcome.
I didn’t get this way by any means of an easy journey, no. I did a surgery that was more like scraping out the innards of a pumpkin, (me being the pumpkin). I did an experimental radiotherapy, called Mibg. I then plunged into another even more experimental therapy called PRRT, I have flirted with chemo, lost most of my hair, been treated palliatively. Adjusted my meds more times than I can count, started new meds, gotten off all my meds. Nearly died a thousand times.
But I’m here to tell you about it, and that’s enough for me. It has to be enough. I’ve made strides I never thought I’d ever be able to make again, like walking again instead of being bound to my wheelchair.
We have to take these small victories and celebrate them!
I’m here to deliver a message of hope, that there is a way of fighting an incurable illness. That in our own way… we can win.
Pheo vs Fabulous 