You go through the multitude of options in your mind what
seems like a million times, the best case scenario, the worst case scenario, the bad, the in between, the unimaginable… Your mind helps you explore these options until there simply is no more, and then at a certain point you just find peace.
Yesterday morning, I woke up with a clear mind; the first thought I had was “I can’t believe I slept so well”. I hadn’t slept so well in weeks, when you’re so worried for so long, your body just shuts down at a certain point and goes into acceptance mode. At first I thought this was the case, but that would mean I had given into it in some way. I felt calm, determined, anew… I was ready.
“Before anything else, preparation is the key to success”
Well, I was prepared, so why should this be any different? I was oddly ready and I was putting everything into being positive, because that’s who I am, my husband by my side, a list of questions I am prepared to ask, and I had already decided I knew what my results were going to be… So I just needed confirmation, and a plan!
Since we had already had a preview during my last MIBG scan of what my results would be like, (see blog post *you’re never really prepared*) it truly helped in being able to absorb the information beforehand. Although it was difficult having to process this information over the last couple of weeks, the uncertainty of whether or not this rare cancer that had been removed during a long painful surgery had spread once again in this short amount of time…I preferred processing in advance, rather than being told on the spot.
Yesterday we arrived at the hospital for my results from my pheo specialist, the intention was to hear the results of my MIBG scan, and to confirm the MIBG radiation plan and timing.
Here’s the thing, you have to have realistic expectations, I had already seen my scan ‘light up’ which means I had definitely had atleast one new tumor on my kidney, which is new. We already knew of a little left overs after surgery, so again, realistic expectations. We just didn’t want to hear news much worse than that, and of course … being eligible for treatment, is a blessing in itsself. Not everyone’s tumors absorb the MIBG radiation, and if they don’t absorb it, the treatment does nothing. So I’m lucky… in a weird unlucky way.
I will relieve you of your suspense, I was right (obviously) when am I wrong?! 😂 Basically what was left over from surgery on my liver, has grown. The guy on my kidney that lit up on my scan? Yes he’s very real, it did spread back over there again. Unfortunately there’s more, to make it easy they’re in the same area. So I didn’t receive the news I necessarily wanted to hear, but staying true to finding the good in every situation.. It’s all in the same area as before, and that is truly a good thing.
My last post I talked about not knowing when radiation was going to be, that in itsself is so difficult just the not knowing aspect of everything for so long. Well now I know everything and have a clear plan in place. I know the risks, I know the side effects, I know the details. I am grateful to say I will be enjoying Christmas with my family, and this will be taking place mid January. There’s so much preparation involved in doing this, so this is the projected timeline for treatment.
MIBG radiation is specifically designed for these types of tumors, it’s an extremely high dose of radiation injected into your body that essentially the tumors absorb, and hopefully causes them to shrink and in turn will decrease the amount of adrenaline the tumors produce, with the result of me having less symptoms due to having less adrenaline pumping through my body from the tumors, with less adrenaline in my body from the tumors… I’ll have less vicious adrenaline attacks, and less damage on my system from the pheochromocytoma cancer. So basically symptom management, and hopefully prevent further spreading, and shrinkage.
Like any high dose radiation it’s not without it’s own set of complications and risks, I had an opportunity to meet with the nuclear medicine doctors who will be actually administering the treatment and working with my endocrinologist to treat me in January. They explained all of the procedural ins and outs and the complicated nature of the treatment to us yesterday, it’s intimidating sometimes because to treat one thing you have to damage several others.
The very first thing my doctor had to discuss with me is bone marrow damage, I will have to meet with a hematologist to discuss this further but so far what I know is that to be safe… I will have to donate bone marrow to myself. Basically the MIBG has a good chance of damaging my bone marrow, and once you need it, you can’t get it back, and it’s better to have your own so there’s no chance of rejecting it. I like his thinking, it’s very smart, (preparedness 😁) the only problem is…. Bone marrow ……. Ugh, like… I don’t even wanna go there. I don’t EVEN want to imagine how badly this is going to hurt, seriously. That’s all I can think about, PAIN! Like extracting my bone marrow, I don’t know how this works exactly, but I’m kind of freaking out. However, I’m waiting on this one… For more info, I will write more on this when I’m more informed.
The plan is I’ll be admitted to a special radiation room, and I’ll be in isolation for a minimum of seven days 😩😭 They will administer the MIBG injection over the course of a few hours, over which time they expect my tumors to freak out and explode with adrenaline. Which is why it’s so important to have such a specialized team, and why it’s so important to be prepped in advance with special medications, they’re basically going to lower my blood pressure and heart rate in advance to a super low level so when they go into crisis level during the initial injection, I don’t die. It’s the same procedure they did before surgery, the only difference is… I’m awake during radiation. So when my blood pressure and heart rate go to a maximum level while the tumors freak out, I’ll feel every minute. 😳 The team of doctors will be there to control this part, but it’s the most dangerous part of the procedure. After that I’ll be radioactive for a few days, so I won’t be allowed to be around anyone. (serge is having a hard time with this one, as am I) 😷👫💏 LOL “but what if I want to go in the room and just risk the exposure”
Then I’ll just be vomiting and be super nauseous and feel like death for a long time, they’re planning on hospitalizing me for a little while after due to my complicated nature, and foreseeing a bit of complications. Once I’m no longer radioactive and am stabilized, I can go home. At which point my blood platelets will apparently be very low, and I’ll be at super risk for infections, so I’ll have to live in a bubble.
If I make it through all of the above, they will do another MIBG scan and compare the results, see how I did, and probably do it all over again 🤓
Time to go buy lots of pink Christmas decorations and distract my mind now LALALA 🎅🏻☃💗