We Finally Know What We’re Dealing With: An Update

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It’s been about 18 months since I found out the biological marker for my medullary thyroid cancer was highly elevated and climbing. Its been 15 months since a suspicious mass was seen on my right adrenal bed, completely by accident.

I’ve seen several doctors in the months since then, searching high and low for answers and treatment. They have all been bewildered. I’ve watched them squint their eyes as they flip through the notes and images. It’s like they are trying to decipher a  language they have never seen before. Their interpretations lacked confidence and their conclusions were often conflicting. I would always leave these appointments with more questions than answers.

What is going on with me?

Today I met with a team that was able to spot my tumors with eagle like precision. They had the technology, and expertise. We finally know what we’re dealing with, but as with every appointment I’ve ever had since diagnosis, nothing ever goes as expected.

Today I got answers.

Yes, there is a tumor on my right adrenal bed. Yes, it is a pheochromocytoma. Even with their cutting edge imaging technology, it is unclear if this is one big tumor or a cluster of 3 tumors. In either case, surgery is advised. There was also a small mass on the left side of my hip. This mass responded to the 3 radioactive contrasts in the same way the pheo did. This would suggest it is also a pheochromocytoma. There were also at least two small masses in the upper part of my chest. These are most likely metastases of my medullary thyroid cancer, and my blood work would suggest the same conclusion.

I will come back to the National Institutes of Health for surgery. This is good, as surgery is my best chance for “cure.” I will meet with the surgical team and discuss the details with them. As for the medullary thyroid cancer, I will have to seek a specialist in this cancer to address this issue.

Overall this was a very positive meeting. The doctor and his team were incredible. I received straight forward, experienced answers for the first time ever. The outcome was not what I anticipated, but of course, that’s how the rare life goes.

I’m thankful that they were so thorough, and found tumors that could not have possibly been found at any other facility. What they discovered here at the NIH will have a positive impact on the outcome of my future.

Michelle

The Rare Life

texture-489276_640As I lay still inside an imaging tube, I think about how grateful I am to be here. I’m at the National Institutes of Health, currently in the middle of my 6th scan in 4 days. I’ve worked for 5 months and traveled over 1,300 miles to participate in a research program specifically for my rare condition.

If there were a Mecca for rare disease patients, it would be the National Institutes of Health. We’re all rare here. We come from all walks of life. We are young and old, we are from all different races, genders, religions and countries. We all have difficult-to-say conditions with impressively small statistics, numerically proving what a rarity we are. Some wear it like a badge of honor, some prefer not to talk about it. In either case, I’m blessed to have met these people. We are so different, but  we share so much of the same experience- the rare life.

We fight back against our conditions everyday as well as the implications of our rarity- baffled doctors, delayed diagnosis, lack of treatment options. We are all here, not just because we need help, but because we want to use our pain as bricks to build a better future for others with the rare life. We subject ourselves to a gauntlet of testing. Countless blood draws, needles in every accessible vein, multiple IVs. We endure radioactive injections, spend hours motionless in claustrophobic tubes. We run ourselves ragged from one appointment to the next, pushing our tired bodies in the name of science.

When I see other faces with me in waiting rooms I feel their weariness. We are all bruised and scarred. We are soldiers in the war on rare disease, and we’re all in this together. One woman in a wheel chair told me, “This is only for the strong.” I know what she meant, not the strong in body, but the strong in spirit. The rare life makes you strong.

Hot tears stream down my temples and into my ears as I stare up at the inside of the imaging machine. I have to lay perfectly still in the tube. I miss my family. My daughter is my driving force, she too is rare. We share the same genetic condition, Multiple Endocrine Neoplasia type 2a. I know that everything I do is for her benefit. Too many people suffer and die unnecessarily because of lack of knowledge or treatments. I will do everything in my power to insure that this NEVER happens to her. I will teach her how to live the rare life, to find your own answers when everyone else is scratching their heads, to clear a path when there are nothing but obstacles in your way, to speak up and demand the care you need when you’re brushed aside, and most importantly, to find joy in each day you’re given.

This is what it means to fight.

This is the rare life.

Taking My Life Back from Adrenal Insufficiency

​I’ve been using the cortisol pump for 8 months now. I wanted to give an update here since I have been spending less time on social media. I am happy to report this time away has not been due fatigue or illness, rather I have been out living my life. Yes, in spite of everything, I have been enjoying a season of good health. Of course that is relative. I still experience things that would send normal people running to their local ER, but to me that’s just life.

Things have been going really well lately. I feel as though I finally have my adrenal insufficiency well managed. It has been, and remains the greatest challenge of my life. This challenge has transformed me, and tested both my mind and body. I’ve learned some very harsh truths about life and the medical industry. I’ve had to research obsessively about endocrinology, nutrition, and medication. I’ve had to fight doctors, pharmacies and insurance companies. The cortisol pump has been the biggest game changer in this journey. Before the pump, my health was gradually declining. I spent much of my time in bed, too fatigued to do things with my family or around the house. On good days I could leave the house, but it would completely wipe me out for days. I was experiencing the symptoms of both too much and too little cortisol because oral medications simply cannot replicate what a healthy body does naturally. I have so much more control with an infusion pump. The first day on the pump my steroid dosage went down by 39% without sacrificing any of my quality of life. My dosage has decreased another 21% since then, and I have a more active life now than I’ve had in 2 years.

Another big change came when I went gluten free. I was in denial about this one, it kind of felt like a dirty secret. I really didn’t want to give up pizza and bread and have a restricted diet, but it happened on accident actually. Mid September I started feeling really good, much more energy than before, fewer low cortisol symptoms. When you live with a chronic health condition, mysteriously feeling better is unusual. I reviewed my data, all of my journals, my meds, my food. What was different? None of my meds had changed. Then I realized that I had been eating all of the same foods as my gluten free daughter, for over a week. Mind. Blown. Was the answer really that simple? Turns out it was. The longer I’ve stayed gluten free, the better and better I feel. I can’t sit here and say this would help anyone else with any medical issue, but it’s been a huge improvement for me. I figure, if I can give up bodily organs in order to be healthy, pizza is really a small price to pay by comparison.

Lately, I feel able and capable. I can handle day to day life with minimal issues. Problems that would have derailed me before are now easily overcome or ignored. I am more involved with my children. I can take them on walks or go the park. We do craft projects, read, and bake together. Not that I’m trying to brag, but this is a big change for someone that hardly had the energy to get out of bed a few months ago.

One of my biggest goals since becoming adrenal insufficient has been to rebuild my strength. Even before adrenal insufficiency, pheochromocytomas made me very thin and weak. I’m sick and tired of feeling fragile and weak. Now I am finally at a place where I am physically able to work on this goal. Exercise with adrenal insufficiency and an active pheochromocytoma presents some unique challenges that makes progress exceedingly slow, but progress is progress. I feel so grateful to have this physical ability and to see my strength and endurance very slowly but steadily increase.



I think if it weren’t for my pheochromocytoma, I could have a pretty normal life now. It’s been relatively quiet I guess. I’ve only had two painful attacks in the past week. I still have small attacks multiple times a day. They don’t feel very good either, but after nearly 7 years of dealing with this, I consider this tolerable. In a weird way, I’m almost grateful for these attacks, as they keep me motivated to get this tumor the heck out.



I fly to D.C. next week for tests and imaging at the National Institutes of Health. With any luck, perhaps this could be the beginning of the end of my “life with pheochromocytoma.” Fingers are crossed!! This will be the first time my tumor has been imaged in over 6 months, so hopefully it hasn’t changed. Hopefully it hasn’t grown much and is still operable, because that is my only chance to be cured of this. I could finally have my body to myself and not have this little tumor control or restrict me anymore. I can’t tell you how amazing that sounds to me.



I have so much to be grateful for. Armed with knowledge, the cortisol pump, and with the help of some diet and lifestyle changes, I am taking my life back from the ravages of MEN2a and the subsequent medical conditions it has caused. I also hope with help from the National Institutes of Health I can one day close this chapter of my life, and this can all just be a memory. A testimony of God’s grace. 

I feel excited and optimistic. Wish me luck! 😉

❤ Michelle

A Cortisol Pump Review: Tandem T-Slim vs. Animas Ping

It’s been over 5 months since I’ve started cortisol pumping to manage my adrenal insufficiency.

I continue to improve thanks to careful management of the pump, lifestyle changes, and reconditioning my body. It’s been a game changer for me, and I’m incredibly grateful for this treatment.

I started this journey back in June with a Tandem Tslim infusion pump. I used this pump for about 3 months and loved it. However, at the beginning of October, the Tslim croaked. I plugged it into a car charger, and smoke came out of the charging port. My poor tslim was fried! 😐

Fortunately, I had just found and purchased a used Animas Ping on Craigslist. Talk about great timing! I’ve been using the Ping since then and wanted to review both pumps from the perspective of a cortisol pumper.

Both pumps are waterproof. You can shower or swim with them. Both use luer lock connections, so you can use the same infusion sets with either pump.

THE TANDEM TSLIM

The tslim is all the rage right now in the diabetes world. It’s tiny, yet has a big 3ml capacity, it’s water proof, and is currently the only pump with a touch screen.

PROs:

-Small and discreet. It’s easy to hide the tslim just about anywhere. Also the belt/waistband clip is pretty cute and comes in a variety of colors.

– Large capacity. This is one of my favorite things about the Tslim. Despite being so small, it can still hold 3ml, which if you mix 1:1 would be 300mgs of SoluCortef. This is convenient for those on a higher dosage.

– Touch screen. The touch screen and user interface are incredibly easy to use. If you can use a smart phone you will have no issues at all with the tslim. It’s so convenient to just dial in a number, or touch a menu option, rather than using arrow buttons to set numbers or scroll through menus.

-Surprisingly durable. The tslim is surprisingly tough for such a little thing. After mine died, I attempted to have it fixed by an engineer. He told me if he were to need a pump this is what he would get. It’s so well made it could not be disassembled even with professional tools and a microscope. So fear not, the tslim is definitely not as fragile as a smart phone.

Overall, I think the small size, large capacity and ease of use are best things about the tslim.

CONS:

-Priming/Reloading. Reloading the cartridge itself takes about as long as any other cartridge, however priming the tubing takes a loooong time. The tslim pumps slow, and it boluses slooowww. It’s no issue for normal basal delivery, but during the priming process and when you’re waiting on a bolus, this gets rather annoying.

– Cost. Your cost is entirely dependent on your insurance coverage. I bought my tslim out of pocket used and it was MUCH more expensive than the Animas Ping.

– Clip comes separately. The cute belt clip I was just talking about? Yeah, you have to buy that separately. It’s $20. Of course that’s not going to break the bank, but you’d think the clip would be included like with the Ping.

– Recharging. You would think the lack of batteries and recharging capability would be a “pro,” but in my opinion its a “con.” It can be awkward being plugged in while recharging the tslim. If you do it while you’re awake, you are pretty much stuck in one spot for a while. I would charge while I was asleep, and that worked okay, but sometimes I’d get wrapped in the cord if I tossed and turned. Some other tslim users charge while in the car, and that sounds much more convenient, but that’s how mine got fried so…it didn’t work out for me. 😐

-25 unit Bolus limit. Tslim will only allow you to bolus 25 units in a 2 hour time period. This is not couting your Basal rate. This means the max you could Bolus in 2 hours is 25mgs. One could argue that if you need more than 25mg it would be smarter to inject. That is probably true, but I’d like to know I could bolus more than 25mg in 2 hours if I really needed to.

– Alarms. The low unit alarm goes off at either 20 or 10 units depending on what you choose. Once it reaches this amount it does not stop alarming. It. Does. Not. Stop. So if you can’t drop everything to fill your cartridge right then, you will be nagged incessantly. You could also consider this a “pro” because it is not going to let you forget to refill it, lol!

THE ANIMAS PING

I had to warm up to the ping. Going from my fancy tslim to the ping with fewer bells and whistles, I just wasn’t impressed, but my feelings on the Ping have changed. It has all the same capabilites as the Tslim.

PROS:

– Pumps fast. So you know how I was just complaining about how long the tslim takes to prime tubing? The ping definitely does not have this problem. It takes only a few seconds to fill your tubing. Boluses are pretty much instant. Much better!

– No extra syringes required. Each of the Ping’s cartridges is its own syringe, so you don’t need a separate syringe to load. So that’s one less thing you have to carry around and one less thing to pick up from the pharmacy.

– Total Daily Dose. I log my pump’s delivery history in an app. With the tslim I had to go to Basal history, then go to bolus history, then add those together for a total. With the Ping, all of this info is in one place. Basal, Bolus and total is right there conveniently under one menu option. I love this feature!

-Battery powered. The ping uses 1 AA battery and it need to be non-rechargeable lithium. These are a lot more expensive than normal alkaline batteries, but OMG they last such a long time it is worth it. I’ve been using the same lithuim battery for about a month now and it’s barely at the halfway mark. This definitely beats being plugged in for a recharge!

-More commonly used. There seems to be more people using the Ping than the newer and more expensive T-slim. This makes second-hand supplies easier to find online in places like Craigslist and Facebook. If insurance pays for your supplies, then it’s not an issue, but for someone like me paying my own way this is a HUGE benefit.

CONS:

-No touch screen. You have to use the arrow buttons to scroll through menus, but this is really only a minor inconvenience.

-Low units alarm. The alarm on the ping will also go off at either 20 or 10 units depending on the setting you choose. The difference with the ping is that once you hit the “ok” button and acknowledge the alarm, you wont hear a peep from it again until you are completely out of SoluCortef in your pump. This is nice if you don’t want to drop everything and refill your pump, but I can’t tell you how many times I’ve “okayed” the alarm and then completely forgot to mix up more SoluCortef. Then I’m caught off guard with “no delivery” and in a frantic rush to mix up more med and fill my pump.

-Bulky. This pump is a little harder to hide than the tslim due the shape of the cartridge and the need to accommadate a battery. Honestly though, at this stage of the game I don’t really care about hiding my pump. I’ve gotten lazy and I hardly ever bother tucking it away in a belt anymore. These days I just clip the Ping on my waist band and could care less about it being out in the open.

-Less med capacity. The Ping only holds 200 units. At a 1:1 ratio that’s 200mg’s of Solu-Cortef. For someone on a smaller dosage, that’s not a problem. However, my dosage is higher than most, so for me this is my biggest annoyance with the ping.

Both pumps I aquired second hand and paid out of pocket. Both are excellent pumps, but considering how much less the ping cost me, I’m pretty happy with the ping and would recommend it to any cortisol pumper. It can do everthing the tslim can, and the dosage history is all conveniently in one place. Smaller med capacity is kind of a pain, but all things considered, not that big of a deal. However, if I were in the future to get insurance to cover a new pump, I’d switch back to the tslim in a heart beat.

❤ Michelle

Still No Idea What I’m Doing: Thoughts on Parenting

In regards to parenting…I have no sage advice. I’m not an expert, though there was I time I probably thought I was. “I’ll never be THAT kind of mom.” or “MY children will NEVER do THAT.” Yes, I’ve actually said those things, and karma laughed and laughed. Really, the only thing I can boast is that I have survived the baby and toddler phases. I think that is an accomplishment. Everyone is in one piece.
Today I was looking through my “Kid Stuff” board on pinterest. For the past 4 years or so this is where I’ve saved all sorts of ridiculous craft projects, warm and fuzzy parenting quotes, child-rearing tips from other non-experts, and LOTS of overly complicated solutions to simple problems. That’s basically the parenting side of pinterest in a nutshell. It is like a trip back in time. I remember those phases of our lives. The baby years, full of tips and products I thought would help make me better at caring for two needy babies. I didn’t realize then I was already the best mom for the job. The toddler years, full of explosive tantrums, hitting, biting, picky eating. At the time, I didn’t think we’d ever make it though these problems. We did. The potty training phase. Oh Lord, this was one of the difficult tests of patience and love. I mean, you go into it thinking you’re already an expert at cleaning pee and poo at this point. WRONG. Maybe it’s because we were training two, but our lives were pretty much saturated in pee and poo for at least a month. Still, we made it through. The poonami eventually ended, and now I have somewhat civilized, toilet using children.
I guess what I’m getting at here is don’t take this job too seriously. Not every problem is the end of the world and some of these phases kids go through really aren’t problems at all in retrospect.
So the home-made organic baby food…yeah, your kid is going to try to eat random things they find in the parking lot. All the complicated “sensory activities”…you will drive yourself crazy making sure it is all perfect, and your child will decide to play with an empty shoe box or water bottle for hours instead. The craft projects…”DIY felt tote for crayons”… seriously, just throw those broken crayolas in a ziploc and move on.
This is a lesson I have to keep reminding myself even now with self-proclaimed “big kids.” I’m still making it all up as I go along, still making mistakes sometimes. I think I’ve put a lot of unnecessary pressure on myself over the years. I guess all moms do. Sometimes it helps to stop and ask myself if this is going to matter in a year. Is it really that big of a deal? These kids are growing up lightning fast, and before I know it they will be adults. What will they look back and say was important to them? I doubt it will be anything I found on pinterest. This may sound cliche, but I think it all comes down to love. Stress less, love more. My new parenting mantra.
❤️ Michelle

On the Road Again: An Update

​I haven’t updated in a while. My medical team has not accomplished much, so there has been very little to report. Doctors tend to do this thing where they stall or shrug you off when things get complicated, and that’s the situation I’m finding myself in unfortunately.

However, I do have a plan B and plan C. 

I am currently applying to participate in a clinical study at the National Institutes of Health. It’s proving to be a somewhat complicated process, but if I am accepted I will be treated by top doctors in the country that have dedicated their careers to studying pheochromocytomas. I desperately need medical professionals with this expertise. This would mean I would have to travel to Maryland for treatment, which would be a challenge for me, but could definitely be done.

In the case that I am not accepted to join the study, I do have a back up plan. 

Our family is leaving Florida and returning to Texas. This means my current 3 hour drive time for medical care will be greatly reduced, and I will be a matter of minutes away from the hospital where my first pheo surgery was performed. This is also good news for my daughter as she is need of a more specialized endocrinologist and does not travel long distances well at her age. I have no emotional support, or anyone to physically help me here in Florida, other than my husband. Having friends and family in Dallas will be a huge benefit. I do wish the circumstances surrounding this move were different, but we will make the best of a bad situation, and as always by the grace of God we will get through this stronger than ever.

Currently, I have been feeling pretty good. My cortisol pump has been doing its job, and I am working to rebuild my strength. So far so good, I can see progress and feel both blessed and encouraged.

Thank you friends.

❤ Michelle

Mistakes Mean You’re Learning: Pumpin’ Ain’t Easy

It’s been a little over 2 weeks on the cortisol pump. It is most definitely an improvement over oral steroids, but wow, I have so much to learn!

My delivery rates still need adjustments, especially at night. So far my sleep quality hasn’t improved much, but I’m confident I’ll crack this code soon! 😀 What I get out of the pump is entirely dependent on how well I can manage the delivery rates and choose a well performing site to place my inset. Picking the right site for an inset can be tricky. I try to choose place that wont be bumped or pulled out, but it also must be a spot with plenty of fat and absorbs the medication well. This means it can’t be near the belly button, any old sites, or scar tissue. Because of surgical scars, I’m somewhat limited on site options.

I’ve been making plenty of mistakes 😉 I had my first bad site as a result of a newbie error. I inserted the cannula without removing the protective cover, and didn’t even realize it. Surprisingly, this site worked for nearly 24 hours, not very well, but it did okay before failing completely.

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Oops! Cannula with the blue protective tube still on after I pulled it out. 😦

Site changes are not the most pleasant thing, even when you’re feeling good. When you’re crashing they’re near impossible. I was fighting to keep my eyes open, and struggling to remember what I needed to do to change the inset. This taught me to keep everything I need for a site change in a bag all together.

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Site change necessities.

I also learned that cartridge changes that are not done at the same time as a site change will waste 10 units of SoluCortef to prime the tubing if I don’t use new tubing. Lesson learned! Save the extra tubing from site changes and use fresh tubing for each cartidge change.

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Extra tubing

Another lesson I learned for cartidge changes is to mix the SoluCortef first, before starting the cartridge loading process. This should have been obvious 😉 . Once I start this process, the pump will stop all deliveries, so I am without medicine until the process is complete. Normally this can be done easily without an issue, but sometimes I do get interrupted, and ideally I want my time without any delivery to be as limited as possible. So now I mix the meds and have everything ready before I start.

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Mixed and ready to load the new cartridge.

When managed correctly, the pump allows me to do more than I could when I was on oral steroids. I still have bad days, usually they are a result of me being too ambitious and over exerting myself. Little things that used to be a big challenge for me are getting easier. Another huge plus, is that I dont feel like a walking pharmacy when I leave the house. Before, I would have to prep and pack all of my doses of pills in order to go anywhere. I still have a dose of back up oral steroids and a site change kit in my bag, but now I can just grab and go, as opposed to all that preperation. I also love not having to take doses in public anymore. It doesn’t seem like a big deal, but its’s a little thing makes you feel less abnormal.

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Back up oral meds and emergency site change kit. These stay in my bag so I'm always good to go.

I’ve already noticed some encouraging improvements in the 2 weeks I’ve been pumping. There is  lot to learn, but I do love a challenge. I only hope this progress continues!

Thanks for accompanying me on this journey friends!

💕Michelle

MIBG & Iodine Allergy

This is an explanation of the scan I’m going for today. From an MIBG pro ❤

Pheo vs Fabulous

You can kind of call me a pro scanner by now, I’ve only done like a thousand. (Okay, maybe not 1000, but A LOT)

My insides like taking pictures just as much as my outside.

It’s that time again, MIBG time! An MIBG is specifically designed to visualize certain types of neuroendocrine tumors like mine, pheochromocytoma being the focus of my discussion as this is the cancer I have.

As many of you know – MIBG is also used as a therapeutic agent as well, I just had my radioactive treatment in January, and this scan is just another segment of my follow up protocol before we dive into the next steps of my treatment.

For those of you who are about to have an MIBG scan and are wondering what it’s all about, I figured I would give you the deets! I even make it more fun and complicates…

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My First Days on The Cortisol Pump

As you may know, I have been working to switch a new treatment, the cortisol pump, to help me manage my adrenal insufficiency after my last adrenalectomy in 2014 made me steroid dependent.

What is a cortisol pump? Technically, there is no such thing as a cortisol pump. It is an insulin pump that has been filled with SoluCortef instead of insulin. Currently, there is no product labeled a “cortisol pump,” but that doesn’t negate the benefit the pump can bring to corticosteroid dependents.

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*Disclaimer: While I did research this treatment extensively before pursuing it, I am still a newbie at this, and by no means any kind of expert at anything. None of this is medical advice, just what I’m experiencing as I begin my journey with the cortisol pump. 😀

Before the cortisol pump, I was on a combination of oral corticosteroids. Hydrocortisone alone was a roller coaster, Prednisone alone was not much better, adding long-acting Dexamethasone helped a great deal, but it’s flat, non-peaking action came with its own challenges. What was too little at one time of day, was too much at another, with no way to adjust. I designed a regimen that mimiced circadian rhythm as best as I could, but it was still not right. The different timing of all the kick-ins, and the durations of these oral medications made my schedule very complicated, and still there were times of day I found myself under or over replaced. I think the regimen I used was great practice for the pump, it allowed me to really see what times of day my cortisol needs change, when the demand ramps up and when it tapers down.

I decided to start my pump a couple hours before my long-acting oral steroids would wear off, like training wheels, I’d see how I did and as the oral meds left my system, then pump solo. So first I had to mix the SoluCortef. I have no medical training, and have never mixed an injection, so this was new for me. Not difficult, but new. A little tedious. It takes 3 vials to fill my pump’s cartridge. I followed my pump’s on screen instructions, along with a video tutorial. For my very first inset, I managed to hit a tiny vein in my stomach :(, AND I forgot to take the paper off the sticky part, (lol) so it pulled right back out. I didn’t bleed or hurt, but it left a mark. New spot, new inset, the second try was perfect! 😀

Do I feel any different? Kind of funny at first, there’s a slight metal taste in my mouth, like when nurses flush your IV line, but not as extreme. I sat in bed and watched more tutorials. THEN, I got up and made dinner. 🙂 Yay!! BEFORE, when I was on oral meds, evenings/dinner time was my one of my worst times of day. It was right when one dose of dexamethazone wore off as another would be kicking in, and I’d usually have to stay in bed and hide. The only way I could actually make dinner for my family was to prepare it ahead of time when I wasn’t feeling bad, either have already made in the slowcooker, or pre-prepared in the freezer. So the fact that I was able to cook a meal at this time of day, was encouraging. 😀

I started feeling weird while I was cooking; foggy, emotional, I felt slow, like I was underwater. I did a quick rate adjustment for that time block, and in about 5 minutes or so I was feeling alright. Quick adjustments are really a huge benefit to the cortisol pump. With oral meds, all you can do is take more pills. You have to just wait and be miserable while they kick in, and you don’t have much control over the amount. For example, a half pill might be too much, a quarter pill not enough. You wont even know until you wait for it to kick in, then if it’s too little, you are stuck waiting for more meds to kick in while you decline, and if its too much you’re stuck with it for the next few hours with no way adjust. Not anymore with the pump.

I knew the pump wasn’t going to be magic. It definitely isn’t. Managing adrenal insufficiency is still a matter of keeping blood glucose stable, keeping electrolytes balanced, and caring for your overall health needs. The pump doesn’t fix these things, all it does is deliver cortisol on a preset schedule. You still need to know when to eat, what to eat, always stay hydrated, and take care of your body, or you’ll still find yourself feeling crappy. Also keep in mind, any other medical conditions you have, you will obviously still have, and they will still affect your adrenal insufficiency. Its not a cure for anything.

Saturday was my first full day pumping, and we had a family birthday party for the kids, so this was a real test. I slept only slightly better than usual, which is hardly at all, my night time rates definitely still need adjusting, but I got up and everything was okay. I actually found myself singing as I got ready, but maybe I was just in a good mood. We won’t blame the pump for that ;). The day went well, I didn’t do anything crazy or have any super powers, but I felt alright and functioned pretty well. I didn’t have any low cortisol symptoms all day which is pretty flippin’ incredible if you ask me. I find I do still get cranky when my blood glucose is low, still very sensitive to spikes in BG, and still get light headed/headache when I don’t get enough salt, but those aren’t really cortisol issues as much as they are “Michelle, have a snack and take a salt tablet.” Problem solved.

My first thought was “Why aren’t they doing this for everyone?” but I can see why some would not be a good candidate for the pump. For example, anyone who has some, or could regain their adrenal function, might not find this treatment worth the time and expense. Since I’m post-bilateral adrenalectomy, it’s safe to say adrenal function is not coming back. I often see people in support groups say things like “too much cortisol feels exactly like too little”…I think the pump going to be kind of tough to manage for those who can’t tell the difference. Also, if you have to call your endo every time you need to take an extra dose…this could be tough for you. Quick adjustments are the biggest perk I see to this, so it helps to have some degree of autonomy. If you do not trust yourself to make adjustments, or your endo doesn’t allow it, this might slow down your progress with the pump. Also, those who are not not technically inclined might have some difficulty operating the pump at first, but it shouldn’t be too tough to learn. 😉

So I’m finally pumping, and so far so good. Hopefully my inset site keeps working well, and nothing unexpected happens. I’m just starting out, but the first day I saw a 60% decrease in steroid dosage when going from pills to pump. Keep in mind MANY other factors could have contributed to the decrease, and my dose was very high to begin with. “Results not typical.” 😉

Thank you to everyone that helped me get this infusion pump. Everyone that gave me advice, support, and donated. It was an uphill battle, but I had a lot of amazing people encouraging me along the way. I have a lot of goals for the future I hope the pump will help me accomplish. I want to make up for the time I lost, but the next step is preparing for my pheochomocytoma surgery and hopefully better cortisol delivery will help with post-op recovery.

Thank you my friends! 😀

💕Michelle

Finally Some Answers: An Update

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I made it through another long distance appointment! I’m pretty pleased that I’ve been able to manage these trips as well as I have. They take a lot of careful preparation, but I can do it as long as I plan for every scenario. Adapting and working around challenges seems to be just as important as getting better in the chronic illness game.

I met with a surgical oncologist and we discussed my imaging results. At my last appointment, with my other doctor, I left more confused and worried than I started. This latest appointment finally brought some answers, so here is what we see going on so far:

Medullary Thyroid Cancer appears stable, there are some lymph nodes to watch, and labs still look on the higher side, but no tumors are seen right now.👍

-The nodule inside my right lung does not appear to be a tumor.👍

-There are 2 tumors:

1. A pheochromocytoma on the right adrenal bed. This is where my adrenal used to be, and where I have had pheo occurances previously. Left side is still clear after 5 years.
2. A tumor in the paraspinal region, behind my lung. We don’t yet know what kind of tumor this is. There will be more imaging to investigate.

-We talked about the “the suspicious liver lesion” mentioned in the MRI summary, which he says is actually the same pheo BEHIND the liver. The liver itself looks okay. That’s not a separate tumor. 👍

So instead of a bunch of vague, scary info, I now know more about what we’re dealing with. Next step is MIBG imaging of the tumors. This is a test specifically for pheochromocytomas. This will tell the doctors if the tumor in my chest is also a pheo, and should rule out any other pheos hiding.

The surgeon told me these are both in operable areas. Of course I’m not excited about the idea of more surgeries, but still, that is very good news. Both sites are operable and manageable. So the adventure begins again, surgery with adrenal insufficiency is going to be a new experience for me, but we’ll cross that bridge when we get there. Surgery is my best chance for long term management of the tumors that come with MEN2a, and best chance at a normal life expectancy. I know I’ve said this every time, but fingers crossed that maybe, just maybe, these tumors will stop coming back this time. I know I’ll always have to monitor and manage my MEN2 the rest of my life, but I still would like to stop this cycle of surgery every year. Maybe a few years off this time?

Overall, I’m happy with how the appointment went, and should have my MIBG imaging scheduled soon!

Stay healthy my friends!

💕Michelle