Trauma is defined as a very difficult or unpleasant experience that causes someone to have mental or emotional problems, under medical form it is determined as causing serious injury to a person’s body.
We will endure many traumatic events throughout our Fight, mentally and physically, and it is when we are left with the fragile pieces of what is left from these traumas… do we allow it to leave us broken, piece by piece, until we are no more? This is where I refer back to: “My mission statement for this journey was to stay fabulous, never let it take this disease that away from me, and to find the good in every situation. Well, I can lose many pieces of me before anyone takes my ‘Fabulous’”
If there was ever a time I needed to read my own words back to myself, it was this week. This week was incredibly difficult, and traumatic was the word for it. I owe it to everyone out there Fighting like me to explain what it really is in these painful times, we are full of fear, distress, trepidation, and Fighting with a capital F – and we are doing it to hold onto ourselves, our fabulous.
Monday, January 11th – Bone Marrow Collection Day
I was ready, as I mentioned in my previous posts… in order to prepare for my MIBG radioactive treatment, it was advised that I should donate and store my own bone marrow/stem cells to be safe. If it should happen that the harsh high doses of radiation treatment wipes out my bone marrow, we will be able to access my personal supply immediately for transplant, and hopefully be able to safely transplant back into me after treatment – should I need it.
Having pheochromocytoma cancer already is the rare of rare diseases, but once you add in the adrenal insufficiency on top of it, it’s just a fun science experiment in my body each day basically. ANY type of stress directly impacts both conditions, stressors aggravate the tumours – making them secrete mass amounts of adrenaline into my body, overdosing my body into shock modes of adrenaline and putting me in attack mode, stressing all of my vital organs every day. Stressors that impact my adrenal insufficiency do the opposite and deplete my cortisol, the hormone I can’t produce naturally, and so I have to give myself steroids to live, and each added stressor eats the steroids I take, etc. So, just giving some context leading up to collection day: we had to travel to physically get the injections needed to stimulate the stem cell growth, and over the course of 3 days inject constantly at home, which was putting my body into a constant super pain. (stressor # 891) Basically, leading up to the procedure, I was already depleted completely, I was exhausted from all of the pain, stress, exhaustion, but I was READY mentally! As I always am… I just didn’t realize quite how difficult it was going to be I suppose, it always surprises me each time, my pheo cancer/adrenal insufficient body tends to let me down in this area, it doesn’t seem match my 25 year old motivated brain.
5am: take steroids to live
6am: take all morning pills to manage symptoms of cancer/bloodpressure/heart rate/pain
7am:take more steroids to live
Drive from hotel to hospital…
7:30am: Go to cancer centre, have bloods drawn. Make sure stem cells are plenty for collections that day, veins are bad… have to be poked three times to empty blood, ouch.
In order to be hooked up to the aphaeresis machine to transfer my stem cells, they need a good line from my body to the machine of course. Most people are able to just get a traditional IV in their arm, you know the one. I was unable to have this done, my veins don’t cooperate as well, which meant I was going to have to have to undergo a procedure first before having the collection done… I was going to have to have a catheter inserted into my neck. More specifically, I was going to have to have a catheter inserted into my jugular vein. I’ve had this done before, but of course I was under anaesthesia, because it was during surgery. This time… I would be awake. Remember the stress factor? Okay, well it’s starting… My stress level is rising, but I’m remaining calm on the outside, because that’s what I do, I AM A CANCER WARRIOR… I can do this. It’s no big deal, there are worse things that people go through, don’t complain Miranda, let’s just go get this insertion done, and it’ll be over with.
8:30– Find insertion centre, so many places it could be.. it’s so big here.. i’m so tired… Serge is in charge, he’s the pilot, i’m just along for the ride. We are lucky we are in this hospital all the time, so many familiar faces, ready with welcoming morning smiles, always wanting to help us any way they can. They’ll never realize how much they touch our hearts, in every little gesture… I wonder if they know how amazing they are, I tell them anyways. Everyone should always be told how incredible they are, you should never hold back your thoughts, especially if they’re good. We are now being escorted by who I can only describe as our angel, his name is Roberto, he’s from the cancer centre, he’s always been so kind to me. I know he’s in a hurry to get to work, but instead he’s personally taking us to the insertion appointment, and calming me down on the way, just by being his normal self – displaying such a beautiful sense of compassion which comes so natural to him. It’s now after 9, Roberto has to leave, we are still waiting for someone to come and get me… I am wondering how this will go, will they know about my disease?
How will this affect the procedure? What if I go into an adrenal crisis from the stress of the procedure… will they know what to do? Have I taken enough steroids to prepare for the procedure? What will they do if I have a blockage, I’m allergic to iodine, they won’t be able to see, what then? I wonder if my tumours are going to behave themselves while I’m laying still, if my tumours secrete adrenaline during the procedure, my jugular will constrict, making it harder to insert… oh dear, this doesn’t sound very easy. Okay Miranda, you’re not even in the room yet, it’ll be fine, stop it. It’s just an IV.
Serge asks me if I’m okay, I lie. He knows, he doesn’t need to ask, and I don’t need to lie, but we humour each other anyways. I hate watching him see me in pain, it’s not often he sees me truly nervous, I am very good at hiding my emotions.
10am – Miranda, it’s time. You can come into this room now, your husband can help you change into this gown, and then he will have to leave so I can insert an IV, then I will take you into the procedure room. ANOTHER IV? Jeeze, my fifth stab of the morning… getting tired, not going to lie. I haven’t even had the first procedure yet. We go over my veins, of course we’ve already just had this conversation at the blood draw, my veins aren’t good. I feel bad for her, I know she’s going to have an issue finding a good enough vein for this IV, this ordeal takes about twenty minutes. We go over my allergies, yes I am allergic to iodine, and medical adhesive, and everything else in the world… yes that means you can’t use iodine in the event of an emergency blockage, I will have an anaphylaxis reaction and die, no I cannot use regular bandages, or really any for that matter, I don’t know how we will dress the wound, special hypoallergenic bandage I suppose, and even then it’s iffy… yes I know I am very complicated. I also have pheochromocytoma cancer and adrenal insufficiency and this procedure can put me into shock, please put a note.
Showtime, there’s the table, the tray, the instruments, I don’t like the look of this. Did anyone write down my conditions? I need more steroids, I’m feeling very tired, uh oh, starting to crash… this isn’t good, going into cortisol depletion, haven’t even started… brain fog is starting, heart rate is rising, nausea, blood pressure is rising, not good… “Okay, lay down on the table” (I can’t, I need help, I need my husband, I need my steroids) I’m not making much sense, I know that… It’s not my fault, that’s what happens when you go into adrenal crisis, you lose control of your body. What’s the point of being awake during a procedure if your voice isn’t working? Thank god, Serge bursts in, there he is, yes, hi, steroids… okay, he’s explaining to the doctor. Yes, I have adrenal insufficiency, okay they should understand now. Okay I will lay down now, my bodyguard is here to help me, I’m safe again. Swallow my pills, it’s okay again, I’ll be fine now. Okay, he has to leave again, procedure is about to start, I’ll see you in a few minutes, it’s quick they say… goodbye.
I’m on the table now, the procedure is being explained to me. They’re going to insert a catheter directly into my jugular, okay. It’s going to go into my heart, okay wait, back up, I don’t know why I didn’t think of that, I suppose I should have known… so this isn’t just a standard IV. A catheter means you’re sticking something rather large into my actual jugular, and it’s going to be fed into my heart, and I’m fully awake, but you’re going to stick needles into the area… to freeze it, cut me open with your scalpel, feed a tube into my jugular, guide it into my main artery with an ultrasound, and I will feel ‘discomfort’ and ‘pressure’. RIGHT. Okay. Complications, alright, let’s go over those, bleeding and so on, but they never happen. Can we talk about those a little more…? I’m laughing in my head, things that never happen, happen to me all the time, what happens if they DO happen, did you hear me that I have pheochromocytoma and I can’t just be put under and operated on…? No, I don’t think anyone heard me. Okay, it’s time to trust people, I’m too tired to talk anymore. Sterile towels are being placed all over my head, soap is being applied, they’re about to cut into my actual jugular, I’m about to feel every cut, every insertion, every jerk, every move, maybe I’ll die, that’ll be weird, dying over a silly procedure like this.
What do you say when someone asks you if you’re alright when they have a scalpel to your throat? “I am terrified and feel like jumping off this table and running for my life instead of having you stick a foreign object into my jugular, but instead I am going to respond with “Yes, I’m fine”, because what else do you say!… LOL, there’s not much else you can say really. There’s not much choice, I have to have it done, to be stabbed or not be stabbed in the jugular… hmmm, well, I guess I’m all in.
Bad ass. Just saying
Okay, there goes one needle, ew ew ew, it’s hitting a nerve… the freezing is hurting, why is this hurting! GROSS. Okay, time for the incision, Okay, OUCH, that hurts too. Now there’s something being literally fed into my jugular, that’s disgusting, that’s really quite repulsive… Oh, there, it’s stuck, let’s wiggle that, nope, still stuck, “it must be stuck on a muscle” yes, that happens I guess, the foreign object is now stuck inside my jugular, and it’s being manipulated all ways to ‘fit’ inside of me. Nope, still not working. Okay, let’s make that cut bigger, after much effort. I can feel everything, hear everything, this is horrid. I have no words. I have no thoughts, I am very numb.
The incision has been made larger, now let’s try and get it in, that seems to be working, it’s going in. Sliding down my jugular into my heart, I’m not dead, that’s a good sign, but I can feel it encroaching on my inner muscles, on my throat, on my insides, it doesn’t belong there, I don’t like this feeling, I want to take it out myself. I lay still. Okay, time to see if it’s placed okay, ultrasound has to now go over everything, ew ew ew. Time to stitch it up I suppose, every loop, every stitch… when will this end. Please, just finish. I’m silent, I’m still, I am so numb with pain. Can this actually be happening?
Now I just have to get through what seems like a ceaseless ending ritual, the bandage is so tight, the stitches are so tight, the foreign catheter is so tender, everything hurts… this is indescribable, my jugular … my body, my mind. For once, I ask a question I never thought I would…
Where’s Serge, I need my husband. No, I don’t need a transporter, I need my husband, I need him now. Please, someone get my husband, all I can think is… I don’t want to cry, I can’t cry, I hate crying in front of people, I just want Serge, and I want to start the collection process, and be brave and strong and get this day over with.
Oh yeah, my day hasn’t even started.
Serge comes into the room, he doesn’t say much to me, he knows I’m going to burst out into tears if he talks to me. He lets the porter whip me up in the wheelchair to the transplant room, knowing it will be quicker, everything is a blur of lights and elevator and numbness.
I’m greeted by the warmest of smiles by a room full of the hematology nurses and staff, they’re ready for me. My nurse who will be taking care of me today explains that she will be hooking me up to the machine, and if I’d like to go to the bathroom, I should go now. I take this opportunity to go into the bathroom, and literally what seems like a lifetime of tears floods out of my body. I don’t know what to call the feeling I had, I’ve experienced pain, but this was so different… this was so raw, so much pain on top of pain on top of pain, and so aware… so much fear, trauma. I couldn’t stop crying, my jugular was throbbing, and my body was going into crisis from the stress alone, this was unlike anything I had experienced… I didn’t have BOTH conditions when having procedures like this before, it’s a completely different dynamic. Even when I want to be in control, I am no longer, pain, so much pain, too much pain. Procedure pain, surgery pain, cancer pain, I just have too much pain… and it’s too much.
I don’t like crying in front of anyone, especially these lovely strangers who I am just meeting, what a first impression, I sound ridiculous… I am in a hospital, I know. I have a thing with how I am, I like to be my normal self at all times, despite my situation, and I feel as though I am abnormal when displaying normal emotions. I couldn’t help it in this case, and I am glad I did, because I can only describe the nursing staff in the hematology clinic as angels. Every.single.one.of.you
Being hooked up to the stem cell machine following this event was not ideal, having my blood sucked from my body all day and staying in one position was not comfortable, nor was it ideal after everything that I had just described… but it was possible because of the care and kindness that had been shown towards me by the team in that room. I felt at ease, I felt comfortable, they took care of my pain, they took care of everything, it’s when you are at your weakest moment and someone literally spends the entire day by your side… making sure you get through that toughest time, you again find that gratitude, that hope, that happiness, the good in every situation.
By the end of day 1, I was so overcome. When we had finished the day… I had nothing left to give, nothing left inside of me, I just wanted to sleep forever, but I did know I had to come back and do this all over again the next day. Minus the insertion of course, because now that it was in, I had to leave it in until the end of collections… and worry about the removal process later. We arrived back to our hotel that evening, where again we were greeted with such kindness, I cannot even begin to explain the level of care that was displayed … all of the extra special gestures to ensure I was comfortable, and could have a smile despite the horrible feeling I was experiencing. I am so grateful for the ability to still see such warmth, we are so thankful.
5:30 – take steroids to live, 6am take morning meds, 7:30am – blood drawn at cancer centre (repeat of previous day)
Day two was rough, I continuously went into cortisol depletion, I couldn’t keep my eyes open… my body was fighting to stay awake and alive through all of the extra pain and stress of the past few days, but it was just too much. The moment I was hooked up to the machine, I just let myself drift off into a sleep, and stayed that way all day, with the exception of vital checks and medication swallows. Again, I wouldn’t have made this day if not for the care of my amazing nurses and husband. Meanwhile Serge was running around the hospital, preparing with my other doctors, getting prepared for the upcoming MIBG radiation therapy – which is happening so so soon… We will be leaving again on the 18th, back for the real deal.
I had to have my jugular catheter removed this day, as the collection process was all done… I was less worried this time around, as the removal is of course not as invasive as the insertion itself. It was still unpleasant, but very well done. I had to still get a stitch, and of course it was incredibly uncomfortable, but a lot of the pain was removed along with the giant catheter dislodged from my jugular, taking a lot of the pressure off of my internal muscles and throat. Sweet relief… So much pain still, I won’t sugarcoat.
Although we had taken all of the proper precautions when it came to ‘stress dosing’ on my steroids to make up for the amount of duress my body had gone through these past few days, I still went into a crisis during my sleep that night. I woke up unable to move, speak, communicate, another trauma. I am so incredibly lucky my body has some insane instinct and survival mode to live, it really really wants to live, because I somehow end up always finding a way to slip out of these instances just by a hair… leaving me forever grateful, and even more hungry for life, and that much more open to everything good that will come my way.
We don’t just get diagnosed, make a treatment plan, have a surgery, get some treatments, and hope to be all better. Every single day is a challenge, a struggle, a painful experience, a procedure, a test, a complication, and yet… every single day we must still find the energy to choose happiness, to find gratitude, to let the adversity define you. How will you let it define you? This disease will take over your life, being naive will not make it go away, but it’s how you choose to let it define you, it’s how you choose to live with it that will count.
This is what it means to Fight with a capital F, this is what it means to be FABULOUS.
Pheo VS Fabulous
Miranda, you already know I hate what you endured in this procedure, but lady this post is amazing. It is so well written, you captured it very well. It’s a giant dose of reality frosted with your brand of fabulous and subtle sprinkling of humor. I so appreciate you sharing the painful and often gruesome reality of cancer. It’s not a movie, and though no one wants to see you suffer, your experience give everyone else a voice and lets them know they are not fighting alone, and they are not at all obligated to suck it up and stay strong in silence. (I LOVE the title too. A little double entendre there? Lol) I was literally so engrossed in this I am 30 mins late for my meds lol. Good job lady! (No seriously, awesome. Keep kicking ass!) ❤ ❤ ❤
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Michelle I read this with tired eyes before I went to sleep this morning, you are truly my best critic, as I know I’m literally speaking on your behalf, on Lilah’s behalf, and so many others. I love that you get my odd sense of humor, and really do understand the other more painful side whole heartedly when you read through this. Okay, no more reading my posts before med time though – we all know where THAT leads, didn’t my post teach you anything!! 😜😘💛
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I am a phellow pheo phunkmeister 🙂
I had MIBG rad last March. It sounds less complicated than yours (owing, no doubt, to different experiences). Where did you (are you) doing this? Mine was at UCSF.
I was in the hospital for about a week after injection. I stayed behind a lead wall, and played my guitar, and read books. My recovery was pretty mild, and I had one day of complete crash.
I wish you the very best, all strength, and the presence of the Divine.
I send you all my courage, and recovery mojo. May this pass quickly, as you continue being phabulous.
my email: firstname.lastname@example.org
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lol, hi Bob! ☺️ How are you doing these days?? I am in Canada, and I am doing my therapy at an incredible hospital, in Montreal. I’m very lucky. The one thing I always promise to be is complicated 😂 It’s my thing… BUT who knows, maybe my MIBG treatment is going to be the most straight forward, simple thing in the entire world, they’re super prepared for me, so I’m hoping ….! & of course… I’m super prepared for them 😉👊🏼 Thank you for reaching out, I do hope you’re finding some relief these days? 💛
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I had a tumor removed in 2012. Since then, no symptoms:)
my catecholamines have been clinically high, normetanephrines also high, so I was diagnosed with metastatic pheo…
Since radiation, I have had no problems, and I wanted to give you that: my ‘no problems’ since MIBG.
In a couple of weeks I return for subsequent scans, where I will confirm that this was all a big mistake:)
Incredible insight into a literally life and death at every possible corner of the path you trudge. “I feel your pain” . .. But I’ll never feel all that surrounds it . . . The having to “trust” this is what you need to do despite it feeling like walking on coals. The back of your mind “Why did I make this choice?” You’re continual battle to fight the pain, the fatigue when the body says, enough, just let me sleep forever. Brilliant insight. I hope nothing like that every happens to you again.
Read this with tears in my eyes for all that you are enduring. You are SO strong! I love that you share the good and the bad and that you look for the good in all things. So looking at the good (because I really can’t bear to think about the bad you have endured this past week)…. I am so thankful that they were able to collect the precious stem cells in two days and it did not take longer or require further injections to convince your stem cells to obediently leave your bone marrow. As a result you have been able to have a brief reprieve from additional procedures prior to your radiation and do what you can to rest your weary body. I am so thankful you have an amazing husband who is there to speak and advocate for you when you can’t. I am so thankful that you have an amazing team of health professionals walking with you every step of this journey. I am so thankful for the opportunity to lift up such an amazing beautiful woman (and family) in prayer.
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