Day seventeen of Cushing's Awareness: Weaning from Hyrdocortisone

I had my next phone appointment with Dr. Friedman in March to discuss my newest test results.  My cortisol had risen a few points and so had my ACTH.  A few of my thyroid numbers looked wonky, but in the grand scheme of things Dr. Friedman thinks for now that my thyroid is okay.  He wants me to have a glucagon growth hormone stimulation test done so that we can be 100% sure of how deficient I am with my growth hormone levels.  If I fail the test, then I will start taking growth hormone injections.  I explained that I'm still weaning down as much as possible on my steroids, but that I am not sleeping well at all.  He feels that I am still in remission, but he is concerned about the lack of being able to sleep at night and the fact that I am noticing very specific changes at night that only can be pinpointed to a cortisol surge.  At the time of this phone appointment I was still on around 20 mg of hydrocortisone, but have since weaned down to 13.75 mg.  I am set to give roughly ten vials of blood on day three of my next menstrual cycle.  Now to figure out when that will happen.  Nothing has been very regular since my pituitary surgery.

Weaning is a very, very difficult process for me.  I've heard the horror stories for years about how hard it is and  unless you have lived it you can honestly never truly understand how difficult it can be.  It doesn't seem like it would be hard because our bodies are already used to excessive amounts of cortisol, but even when you take away the smallest amounts it's like every pain receptor in your body wakes up and starts screaming.  I initially was doing 2.5mg weans every week to ten days.  Within 24 hours of the wean I would start hurting all over.  It has been likened to what a person feels like in withdrawal from heroin.  I can't say for sure as I've never been a heroin addict, but it literally feels like something that would have no sensation such as your hair is capable of hurting during a wean.  I feel like my bones are going to crumble, my joints will ache so badly as if there is absolutely nothing in my body lubricating them when I move.  So that's the first 24 hours, then on day two I experience all of this and then get hit with nausea.  Everything makes me feel like I am going to heave, but I never do.  If I feel that close to throwing up I take a Zofran and lay as still as possible in bed in hopes that it will pass.  Diarrhea usually accompanies all of the other symptoms and let's not forget the lovely headaches.  Weaning feels like adrenal insufficiency, but as long as I am not throwing up I just try to survive it.  Day three of a wean feels like a semi smashed into my body.  I am exhausted, achy, still nauseous and ready for my body to start adjusting.  Usually during those first three days I am able to sleep up to eight hours, but only during the day.  I count on my wean days being the only days I actually get sleep during the week.

Once I got down to 15 mg from a starting amount of 25mg, I decided to start weaning in increments of 1.25 mg instead of 2.5.  2.5 mg was starting to really take a toll on me and I think the lower I get the harder it will be for me to take that big of a chunk away.  I tested this theory out this week and definitely feel that I was able to work through a 1.25 mg wean a lot easier than a 2.5.  However, I am still experiencing all the usual side effects, but maybe toned down a smidgen.

They say to take baby steps when weaning so that your body can gradually adjust.  If I truly felt I was in remission I might not be pushing myself so hard to get weaned down.  Dr. Friedman doesn't want me weaning any more frequently than once a week, so I will adhere to that.  I honestly do not feel that I am in remission.  Every night I am up ALL night long again.  I look in the mirror and I see that red face coming back.  I honestly believe it looks more red than it ever has.  Even my stretch marks are more red and angry than before my surgery.  Every wean I keep thinking that I will start to notice a little change for the better, but I don't.  It's really, really frustrating to me.  I just want this nightmare to be over with.  I want to get better so that I can enjoy my life and be the mom to my kids that I want to be.  I want to go on bike rides with them, take them swimming, run along side them, but instead every single day I struggle to just take a shower.  This disease is very depressing and it's one that takes a huge toll on you physically and mentally.

I have days where I just look in the mirror and start crying.  I know that the Cushing's is still there, but then a dear friend will tell me to hang on to hope and just wait until I am off the steroids completely to see what happens.  Maybe my pituitary is awake again and everything is just extra and keeping me sick.  Every day I question myself.  Is it here, is it gone, will it ever get better?  What will my next MRI show?  If it shows tumor regrowth, will I have surgery again?  Will I be one of the people who has to have their adrenal glands taken out in order to finally be rid of the Cushing's monster?  So many unanswered questions.  For now, it's time to wean down then start testing for Cushing's again.

I really, really hope I am wrong this time.  If it is indeed back, I will put those boxing gloves back on and kick it's booty!  I've got a lot to fight for and I may have my bad days, but I am not going down without one hell of a fight.

Here is a video about Cushing's that was done with my Endocrinologist, Dr. Theodore Friedman and a friend I had the honor of meeting online.  She is a true Cushing's warrior!  I saw this episode on the National Geographic Channel years and years ago and immediately started crying.  I saw myself in this video and I remember looking up Dr. Friedman and feeling sad that he wasn't nearby.  I only wish I would have found a way to get to him sooner.  He truly is a genius in this field.  I hope he gets cloned because without his expertise and research I would still be wandering around looking for help.  I wonder how many others out there are suffering the same way I did because of the lack of understanding of this disease by the people who are supposed to be "the experts?"

Day Fourteen of Cushing's Awareness: Surviving the aftermath

When I wrote about my artery bleed, I didn't realize how much it would bother me.  It was like picking open an old scab and watching it bleed all over again.  I've been through a wringer of emotions since I wrote it.  I know how lucky I am to be alive, but there is always this fear in the back of my head that it can happen again at any given moment.  If I have to have another surgery in the future, will it happen again?  The thought of brain surgery again doesn't scare me, but that feeling of drowning in my own blood and feeling helpless...oh yes, it scares me very much.

Once I was discharged I was told to act as if I had just gotten out of surgery again and to take all the same precautions such as not bending over, no straining, not picking up pretty much anything and overall just taking it extremely easy.  You never realize what a big task something like that is until you aren't able to do pretty much anything for yourself.  I couldn't even bend over to turn on the shower.  Since my pituitary surgery I was put on a cortisol replacement called hydrocortisone.  When I had the surgery to remove the tumors it pretty much left my pituitary rendered stunned and non-functioning.  For as long as I've been sick the tumors were secreting too much ACTH, which in turn sent a signal to my adrenals to create more cortisol.  In a normal person their pituitary would tell the adrenals to make cortisol at certain times of the day, in times of stress and also in illness. Most normal people will have a higher level of cortisol in the morning so that it wakes you up and makes you feel alert to tackle your day.  Mine was bottomed out in the morning, but at night would soar to very high levels.  Much higher than that of a normal person.  Anyway, what I was getting at was when they took my tumors out my pituitary basically didn't know how to function on it's own, so I have to take steroids/hydrocortisone to basically keep me functioning properly until my pituitary "wakes up."  Some people experience it fairly soon after surgery, some are still waiting for it to function properly years later.  It just depends on the person and the amount of damage done to the pituitary.  Any time my body is in distress or if I have an infection I need to take more hydrocortisone in order for my body to function properly or else I risk going into something called adrenal insufficiency.  Adrenal insufficiency can lead to an adrenal crisis which can be absolutely deadly.  I have to carry around a syringe and a vial of an emergency dosing of hydrocortisone in case I start getting so ill that I cannot function or keep my hydrocortisone pills down.

Since my bleed I have experienced adrenal insufficiency quite a bit.  It usually starts as extreme nausea for me and then leads to diarrhea and feeling very cold and lethargic.  I also notice when I'm starting to get low I'm not mentally functioning right.  I sometimes can't spit out words correctly and have said things that make absolutely no sense.  At that point I take a stress dose of hydrocortisone and pray it relieves the symptoms.  I also have become best friends with Zofran which is a medication for nausea.  

My first real experience with AI (Adrenal insufficiency,) was on my birthday.  It was exactly one week after my artery bleed and I really wanted to feel like a human and go out for dinner with my family.  I had exhausted myself by just getting showered and leaving the house.  Once we arrived at the restaurant I was so sick to my stomach I could hardly eat.  At that point I swallowed a zofran and prayed I would make it through dinner.  I ended up having to stress dose, but I stress dosed in small amounts.  I would feel better for a little while and then the nausea would hit me again.  It is absolutely horrible how sick it can make you feel.  It was also on my birthday that I started noticing an odd smell inside of my right nostril, which was also the side they used to access my pituitary and also the side of the bleed.  It started off as a meaty type smell and as the days progressed it became outright foul.  It smelled like rotting flesh and was absolutely repulsive.  It was all I could smell.  I called MD Anderson and they prescribed me some antibiotics.  They figured I had a sinus infection which is very common after this type of surgery.  It seemed to help a little bit, but there wasn't much I could do.  It was till too early in my recovery for me to use a sinus rinse to try and rinse out some of the gunk that was hiding up there from the bleed and surgery.  I just stuck it out and hoped the antibiotics would do the trick.

A few days after starting the antibiotic which was called Cipro, I was taking a nap and woke up to the worst chest pain I have ever felt.  It felt like my heart was being ripped from my chest.  I literally felt like my muscles were shredding around my heart.  It hurt and came so quickly.  I would gasp for air, clutch at my chest and then it would pass.  It happened several times then faded.  Later on that evening it started again and it was becoming more frequent.  I was scared I was having a heart attack or God knows what else.  Once again I called my mom and asked her to come get me so that hubby could stay with the kids.   My dear mom picked me up and off we went.  It happened repeatedly on the way there and once we got inside they took me back immediately and hooked me up to a bunch of monitors and started an EKG to check to see if I was having a heart attack.  The EKG looked fine, but of course nothing was happening when they did it.  They took a bunch of blood to test my enzymes and then in came the doctor.  It was the sweet doctor who saved my life just less than two weeks prior on the night I had my artery bleed.  She was so kind to me and told me she adores me, but if I wanted to see her I could just come in any time without needing to be a patient.  lol  Her biggest concern was that given my history that I possibly had a blood clot.  Once again I was sent off for a CT scan, but this time it was done on my chest and then they also took a chest X-ray.  Everything seemed to be okay, so they kept me for a while, gave me more good drugs and then sent me home with some pain killers.  They told me to come back if I felt it was getting worse.  It happened a bit more, but did seem to settle down.  After doing some research I found out that Cipro is a horrible, horrible antibiotic for some people.  It can cause severe tendinitis and has many other bad side effects.  

I forgot to mention earlier, that a day or two prior to my artery bleed I called in to request more pain medication and it was found out that when I ended up in the E.R. back at MD Anderson that I tested positive for a urinary tract infection.  That is why I spiked the high fever, not because of anything else.  They told me I needed to be on antibiotics, so at that time I was prescribed the Cipro, but when the artery bleed happened and I was put in a local hospital they decided to put me on a different antibiotic.  Once I got out and felt the infection in my sinuses coming on I called MD Anderson back and they refilled the prescription to a full dose of Cipro.  I do find it odd that within two days of taking it I developed an artery bleed, and then after taking it the second time I ended up in the E.R. locally with what felt like tendinitis around my heart.  Was it the cause of all the issues?  I will never know, but I know that I will refuse that drug for the rest of my life.

I will write more about my lovely infection in tomorrow's post.  It's already almost 5:30 in the morning and I'm still awake. Oh Cushing's, how I hate thee.