Remedy for the Rare – MIBG

Well this is awkward… I think it’s been 12.. days, I don’t even know quite honestly, I’m completely disconnected from the world right now.

I kind of left all of you hanging, I apologize for my absence. I was just having MIBG radiotherapy, no big deal, my tumours haven’t been very happy with me that I turned on them again, and my body doesn’t like that I injected it with a radioactive foreign substance that seems to be making it feel all sorts of nonsense. Basically we’re in a fight, or rather a war, my body and I, and my tumours, I think they may have even joined forces and are ganging up on me it seems… because their wrath, WELL, excuse me… it’s not something I was quite prepared for, even in my best attempt:ย MIBGย you can read here how prepared I thought I was (ha!)

You’re never quite prepared for the level of rare you experience when having a treatment administered into your body that could have so many different outcomes. It’s not as if it’s done every day, you are unique to to the medical field, and it’s you who will keep everyone on edge for the next two hours. You are no longer rare, you are literally a spectacle, a performance of medical fascination that is mixed with a nervous anticipation, and an uncertainty that can only be eased with time… and patience.

It’s a good thing I like to be centre stage ๐Ÿ˜‰

image12

It may be intimidating for some to have 10-15 physicians watch as the radioactive solution enters into your blood stream, watching from behind a special radioactive barrier. (As shown above) in the room with me was… my radioactive solution dripping into my blood stream, my IV, my blood pressure machine timed perfectly to measure my vitals every 15 minutes, my ย second IV for fluids, maybe some other gadgets… like my laptop, where I tried to watch saved by the bell and ignore the commotion of what was happening to me, but other than that I was completely isolated of course. If I didn’t have 10-15 of the best and caring physicians in the entire world watching over me through my radioactive shield, maybe I would have had a little more concern… but throughout the administration, I felt rather peaceful. I was okay with everything happening, and I love my nuclear medicine team, that kind of helps. I knew that if something were to suddenly go wrong, they’d come running, and I’d be in expert hands… so there’s that. The administration of the liquid was pretty uneventful, we all kind of thought I was going to implode or something, I was in pain and had to urinate REALLY quite badly… but other than that, it went rather well. I showed up at the hospital for 8:30 – treatment was late being administered around 3:30 and finished around 5:30pm on the 20th of January.

Part 1 – Success !ย 

Easy – what were we worried about? This is nothin’. Can I go home now? Since all the fun is over, everyone is leaving, bye bye doctors! I’m fine, I feel great, that was fun, maybe we can do it again sometime soon.

Okay, perhaps I spoke too soon. It only took half an hour and I was starting to feel unwell, ย I had felt worse pheochromocytoma adrenaline attacks in my day… so I said to myself, okay, if this is the worst of it… it’s not THAT bad! I can deal with chest pain, tightness, heart palpitations, and uncontrollable shaking… this isn’t TOO bad. Suck it up Miranda. It means the tumours are getting the treatment, they don’t like it, but that’s a good sign…

10:00pm – fairly certain I’m not being over dramatic when I say this is going to be farewell, everything is happening, I can’t do this, I’ve never had this many symptoms hit me at once, my body can’t sustain this type of attack… for this long… this can’t be happening, someone help me …

Isolation…

That first night of radiation … was one of the worst nights of my life.

I’ve had to endure a lot of pain, uncertainty, and physical trauma with this disease… but that night… it really had to be in the top three. I won’t give it a definitive placing because my surgeries for this disease, well, they were PRETTY brutal, so I’ll leave it as a ‘top’ placement. When you go from feeling a certain type of ‘normal’, going into treatment I didn’t feel perfect, but it was my norm, so I went from feeling ‘normal’ to all of a sudden being hit with EVERY single symptom I’ve ever felt in my life associated with this disease… all at ONE TIME. By 10 o’clock I was full blown being physically assassinated, and it was NOT pretty.

My blood pressure jumped up making me feel super unwell, my chest was tight and physically hurt, my heart hurt, it was pounding in my ears and I could feel my still fresh jugular wound pounding out of my neck from my heart rate, my neck glands were swollen and creating more pressure in my head, my headache felt as if my skull was actually growing inside of my head… my eyes felt like they were going to pop out of their sockets, all I could taste was metal, and blood, from my gums bleeding suddenly, (yes, when things start bleeding out of no where on your body, it’s incredibly alarming) then the nausea… oh dear the nausea, game over. Just kidding, who just kicked me in the back? No one, that’s just my bones, oh, all of them feel like that now, amazing. And…. now I am completely drenched in sweat, and can’t stop sweating, and won’t stop sweating, it’ll never stop. I also can’t stop peeing.

I know this seems like an insignificant detail, but when you’re in this much distress, and your bed is high, and your hooked up to EVERYTHING, and you must unhook yourself from said machines EACH time you have to go to the bathroom, and then re-hook yourself up to EACH machine properly once you make it back into your giant bed by yourself… it’s literally a process, and a debacle, and it makes you want to cry with frustration each time. Now not only do you have to do all of this when you’re not thinking straight, not walking well, you’re dizzy, and confused, and you’re fairly certain your body is going to explode at any second, every time you unplug your IV, it beeps at you constantly, and won’t stop, and your poor night nurse has to come in and expose herself to your radioactive room and self to come fix it, and this happens over ten times… and each time takes time to fix, so the beeping alone is enough to drive you out of your mind. These details, I swear… they are everything when you are completely alone, when you have nothing else to focus on – when you have nothing but a silent room, your pain and suffering, and a loud beeping assaulting you and your already unfortunate circumstances.

Night one, you know exactly where you can go.

In the meantime, would you like to see my beautiful isolation suite I had? It really was quite nice, minus the tumours imploding part and feeling the worst ever.

Over the course of the next few days in my lead isolation room behind my special radiation screen I showed you above, everything I described to you above repeated every day, just not with the same severity as it did that first night. Nothing could ever hit me as hard as it did that first night, but it was close. Every day was awful, and is still is as I am writing this. However, since I am incredibly obsessive compulsive when it comes to keeping everyone up to date and also sharing my journey for the sake of awareness, I don’t like falling behind too far. So with my little burst of insomnia energy, I am laying my soul out for the world to read once again.

I thought waking up each day I would feel a little better, but it was just an exact replica of the day before, sometimes worse than the day before, which I had not anticipated… I thought things got better as time went on, but it seemed the opposite for this treatment. I guess it takes a bit of time to settle into your cells, and once it does, the more havoc it causes in your system. Having radioactive isotopes injected directly into your body is completely different then any other ways, it becomes apart of you. YOU are completely radioactive, which is why I had to be in such an isolation setup, in fact I still am… even though I am at home I still am following strict protocol to be sleeping alone, not within a certain amount of feet of people, I still cannot kiss or touch Serge, there’s so many restrictions still, and will be for a little while. It’s crazy how potent it is.

I am grateful that my incredibly persuasive husband found a way to see me in my isolation suite, even if it was through the special protective glass. Had it not been for him… I don’t know what I would have done. He was able to come in and stay a certain amount of feet away from me after a certain amount of days, and bring me foods that I could actually not want to vomit looking at, so that was a welcome change. Just seeing him was enough to make me want to get better enough to go home, I wanted to be better, to look better, to feel better, for his sake. I am grateful that we have so many people incredibly supportive people behind us throughout the hardest times of our lives, we can’t thank each and every one of you enough times for the outpouring of love and prayer and support we receive when we need it most. I am grateful that although I am fighting this disease with all I have, and it is rare and awful and relentless… I have a medical team who doesn’t give up on me and is matches my effort and is unique to the medical world, they are superior and I am so thankful.

I do not feel it is appropriate at this stage to have any ‘expectations’ so far, as it is a complicated disease and even with positive results… it is impossible to know how long that can last, and with negative results, we can try again. So I will reserve my opinion on my expectations for now, and just wait for once. I will be going for an MIBG scan soon, to have my whole body scanned and see how the treatment did. I will reserve hope and pray that I can find some relief eventually, so that I can enjoy some precious moments… because that’s what life is all about.

I really base everything off of how I feel, right now I feel awful. I am told I will feel this way for a number of months because of my pheochromocytoma cancer and adrenal insufficiency combination, and of course my pain level that just… is part of me. There’s elements that can’t go away no matter what we do, but there’s hope that we can make me a lot more comfortable, and that’s really the main goal, that’s my expectation, is that I can just be a little more comfortable, and perhaps enjoy a little relief here and there… a vacation perhaps? ๐Ÿ™‚ OMG, a girl can dream… this girl needs some serious R&R

We are completely exhausted. I am depleted, hurt, scared, I have zero energy, nauseous, I am still radioactive, I can hardly have the energy to shower, I still have daily adrenaline attacks, I sleep all the time. ย We are having to keep an eye out for infections and horrible things that will make me have to go back into the hospital, I am overwhelmed with the amount of new symptoms on top of the old, and I am being honest when I say there is nothing fabulous to report this time around just yet.

The only Fab around here is all of the love I have received… and I am giving it back in the form of honesty, and updating you all so that you can know what’s happening to me and know you are in my heart, and what’s keeping me going.

Follow me to find out what happens next

Pheo VS Fabulous โค

instagram: @mirandasimard

#pheovsfabulous

Soooooo tired, goodnight loves.

16 thoughts on “Remedy for the Rare – MIBG

  1. Thank you for sharing Miranda…know that you are in our thoughts and prayers! I cannot even begin to imagine what all of this is like for you and Serge….. I am so grateful for your courage, strength, stamina, honesty, and your Fabulousness! Love you โค

    Liked by 1 person

    • Thank you for always being there Debra ann โค๏ธ We Love you too very much – if I have been MIA it’s just because it is very hard for me to respond to messages lately .. XOXOXXOXOX !!

      Like

  2. Miranda, I’m glad you gave us such an honest update! I was worried about you. Glad to know you made it home. Sucks that you are feeling so bad but hopefully, it’s killing those nasty tumors! Hang in there and know that I am thinking of you and sending you good juju!

    Liked by 1 person

  3. Miranda i.ve never met you but hope to some day i feel your trauma you are going thru.i pray for you every nite.but your courage is amazing!i hope i could be that strong and brave in the face of such chaos on life.it may feel like it at times but you are never alone theres so many family and friends praying for you.i hope you start feeling better soon.my mom use to tell me god would never give us more than we can handle .he must see your strength and know you.ll come thru this smiling.god bless you and all your family your in my thoughts and prayers keep the faith and the fight strong!xxoo take care.

    Liked by 1 person

    • I’ve never been so grateful for all the family and friends back home supporting us – it is amazing. I wouldn’t wish this upon anyone though however lol, a very good friend of mine battling the same illness as I made a very good point recently by saying .. When God gives people more than they can handle, it is so they can reach out to him in prayer, and that’s what I and everyone else has done for me, that’s the way I choose to see it. It’s brought everyone closer, and that’s the one thing I will be forever grateful for.

      Liked by 1 person

  4. Love you lady!!๐Ÿ’–๐Ÿ’– I wish MIBG didn’t have to kick your ass while killing these pheos!!๐Ÿ˜” We will just have combine and concentrate all of the miracle cures into a nice refreshing colonic. lmaoooo! Clear this whole thing right up STAT. ๐Ÿ˜‚๐Ÿ˜‚๐Ÿ˜‚

    Liked by 1 person

  5. I think your tumors giving up their hormones is a good thing. Hopefully going forward they will be less of a nuisance.

    My son is getting a low dose MIBG injection tomorrow and an MIBG scan the next day. I told him you were home and the high dose MIBG had quite an impact on you (I only passed on a few details, no need to get him worked up.) We are hopeful his tumors will go quietly. You mentioned going to the bathroom. Did you have a catheter? I gather everything that comes out of you is low level radioactive waste. Did they let you keep your laptop?

    Looking forward to some “Hey I don’t feel so bad today” posts.

    Oh, your pajamas may work as dryer sheets for a while since radioactivity dissipates static charge. You may rundown your phone batteries quicker too for a while (wink).

    Liked by 2 people

    • I definitely think it’s a good thing Steve. A bitter sweet part of this lol. I don’t think your son will have NEARLY as much fun as I am. ๐Ÿ˜‚๐Ÿ˜‰ the major difference is that his tumors are completely inactive … Mine were COMPLETELY active and incredibly obnoxious before the treatment as well, so, his blood pressure may raise slightly and he may get the tiny bit of nausea but that would be pretty much it I would expect, and those things are so easily controlled with medication (they will be prepared in advance for those things) – I wouldn’t worry about those things too much, not in comparison anyways.

      Also, in my case .. Because of my adrenal insuffiency, it really adds to the complication factor, so again highly individual cases.

      I did not have a catheter, I wish I had in a way, it would have been convienient for getting in and out of bed what seemed like a thousand times and unhooking myself from all the machines… But I appreciated not having one more tube in me, SO, no I went to the bathroom the traditional way and went a lot of times, flushing twice each time I went since actually bodily fluids are the highest level of radioactivity …. Neat huh? Lol that’s what flushes it out of your system the most, urine and sweat.

      They let me keep everything with me, my phone, laptop, anything I wanted. ๐Ÿ˜ˆ I WAS PREPARED…. Believe me, you have to be. Think of EVERYTHING.

      Liked by 1 person

  6. Pingback: There’s always a reason to smile | Pheo vs Fabulous

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s