Due to physical illness I am required to find a new balance in my life. Hopefully as I progress through this process, there will be fewer posts about my illness and it's effects and more posts about life in general. Let the games begin...
I just realized I have failed to announce my upcoming pituitary surgery!
I will be having my surgery on February 7th at the MD Anderson Cancer Center in Houston, Texas, and Dr. Ian McCutcheon is the neurosurgeon that will be performing the operation. We will be leaving for pre-op appointments (of which there are many) that first weekend in February.
The time is fast approaching! At times I feel a squeeze of anxiety in my chest, but 6 kids and the internet help distract me from dwelling on it. There has been enough logistical planning required that I haven't had a hard time with it yet. I AM excited for surgery, and to see the recovered me, just not the in-between part! ;)
I have an online friend who just recently found out she has Cushing's and is trying to learn about this disease and all it entails, all while quite ill. Interestingly enough, she and I both had similar experiences today. Okay, the method wasn't too similar, but the meaning was pretty close and hit us both rather abrasively. You see, today we were both told that we shouldn't talk about our illness to people we would expect to be caring and supportive.
Some of this stems from ignorance, and I can't blame them too much for that because even doctors are ignorant of this disease, but knowing that still does little to lessen the sting. So, let me explain a few things to those who want to get past the ignorance and move more towards support and understanding: This disease takes just about everything you've got and then some. Literally. It affects EVERY aspect of your physical body, every system and function, it drains all energy even for simple things, directly affects your emotions, your ability to think and concentrate -everything. If something affected your life that dramatically, and that universally, it WOULD be a part of every aspect of your life as well. Talking about it would be talking about your life, and vise versa. And talking about it is not a measure of your optimism or pessimism, it just *IS.*
Not talking about it does not make it go away, either. In fact, it generally makes things worse for us. Even when someone knows we are ill, they rarely understand how much this disease does effect unless they've somehow experienced it for themselves (as the one ill or a support person). (Think of the worst flu you've ever had, plus bipolar disorder, plus an extra person in weight, plus being 75 years old, plus insomnia, etc...I could keep going but you should get the picture!) Expectations of what you are capable of and what diagnosis, treatment, and recovery should look like are completely different with this disease than surgery and recovery for more common ailments. It is not fast. It is not easy. Even a good outcome can mean lifelong difficulty, and certainly 1-2 years plus of recovery.
To people around me, I may sound like I am pessimistic about my brain surgery because I explain the risk of recurrence and the long recovery time up front. I know I will receive a cure, even if I don't know in what form or timeframe it will come. I talk about the "negatives" because of people who have these false ideas, because I don't want them ignorant. Again, it isn't negative, it just *IS.* I know what to expect and I know that if everything goes perfectly, it will be long and hard. And still, I am THRILLED for the chance of surgery, and the remission that may bring. When those long, hard days of recovery roll in, I do not need uninformed people coming up to me on a difficult day and making judgmental or flippant comments. I don't need to again be blamed for the fact that I haven't recovered yet, some 3 or 8 months after surgery, to have their support withdrawn because I must be faking, or to have them tell me that my daily struggle is inappropriate to discuss with friends and loved ones. In fact, the stress such comments/actions would bring me can be life-threatening in the days and weeks following my surgery.
When you think about it, we don't expect someone who has just found out they have cancer to NOT think/talk/read/research about it, or someone who has just had a child with down syndrome or autism. It is consuming! It is new, and it is big, real and in your face. Even with something positive like pregnancy or childbirth, we women talk about it all the time for a long time, and every time the subject comes up, we talk about it more! The difference is that Cushing's only gets worse as time goes on and steals more of the old self we once had. It is truly like mourning the death of your old self, learning what this new self is and what it requires of us, all while trying to fight for a diagnosis and treatment so we can get to the next self, the post-op, recovering self. Right now Cushing's IS all but ruling my life. I don't make any excuses for that --it does take over; that is what it does. I also HAVE been fighting back as best I can and have been for a long time. Now that I've got the upper hand, I plan to win! But, for now, this is a big part of my life. If you wish to share a part in my life, you will, sad as it may seem to you, also have to share a part in my Cushing's. If you want to know about my day, you will undoubtedly hear about Cushing's in some way. If you want to understand why I do what I do, you'll have to understand something about Cushing's. If you want to be able to support me, you'll have to know something about what I am going through. It isn't an ultimatum, it is just the way it works. I can't tell you how many acquaintances and old friends have told me they've looked up my disease, researched it, and asked questions or offered words of support showing that they spent a few moments to learn about what is happening in my life. It is SO touching that they would spend that time, that they would show that love and concern. One friend followed my progress and realized she had the same issues, went to her doctor, and now is well on her way to her diagnosis (She has the lab work proving disease, just has to locate the source now). Who would have thought? I don't take credit for her diagnosis; she did the work all on her own...but I AM so glad that she will get the help she needs now.
Maybe through reading about my illness, there'll be a little spark planted in your mind, so that the when you see an obese person you stop and think that their body may have done this to them and have compassion on them. Or maybe you'll have a friend who shares some odd symptoms one day, and you'll remember a tidbit you learned, and that'll be enough of a nudge to help them find the information and treatment they need.
Life isn't as black and white as it seems. We are all connected more than we'd like to admit sometimes. And, the world can always use a little more compassion.
I started writing up a bit of my story because I joined a new support group, and realized it was far too long for an introduction. I decided I would paste it into a document and work on finishing it as my story for the Cushing's-Help website's patient bio's. I'm not sure I'm done...I should probably add my symptoms list for others to be able to relate to themselves, but here is what I've written thus far this afternoon:
I've had random symptoms off and on for years (almost two decades now, from about the age of 15) but didn't realize they were related to illness, or that I had one overarching disease causing them all.
Looking back, the onset of my disease was in my teen years. I gained more than 60lbs in roughly a
year's time without changing diet or activity level. I developed stretch marks that ran from my knees
to my elbows (and everywhere in between!). I started losing my once-thick hair. I developed horrible acne. I went from being an early morning riser to staying up late at night because I was wide awake, and waking often throughout the night. I went from being happy overall to being anxious and depressed for no apparently reason (and medication had no effect on it either). I was told it was either all in my head or all my fault (by varying people, some directly, some implied it) and I internalized that and just assumed I was too lazy and had bad genetics... I TRIED to exercise but would feel so sick afterwards that I couldn't make any gains, I joined a gym and put myself on a diet in high school but none of it made any difference. When I brought up my symptoms to doctors, they could never put it together, often blamed me for them (Just diet and exercise and it'll go away), and sometimes treated me like I was just plain crazy. I still don't go to doctors unless I have to because of those experiences.
After getting married, I had had some complicated pregnancies...but it was more than that. I would get flank pain and drop into "lows" that I didn't understand, complete with feeling cold, diarrhea,
weakness, exhaustion, nausea, loss of appetite, and extreme weight loss (muscle loss, more like it). I
had high cardiac output but low blood pressure and a high pulse rate. I'd go into tachycardia for NO
apparent reason and had all kinds of cardiac monitoring done. My blood pressure was labile, but usually low, and still I'd end up with severe complications. Breastfeeding wasn't going well despite the "mechanics" and flow being there...my babies were never satisfied and I always felt sickly. The
differences were drastic (but a bit graphic to share here publicly). I seemed to get pregnant at the
drop of a hat, but my body seemed unable to deliver on it's own. My body just didn't react like it
should to anything. I even once had an episode post-partum that now I know was likely somewhere between adrenal insufficiency and adrenal crisis. I was left alone to sleep it off (just thinking about it now scares me), but I didn't know any better at the time.
Then about 3-4 years ago I hit this point where I just had the feeling that if I didn't get whatever was
going on under control, I'd end up with something more permanent and dangerous (like cancer or
diabetes). I still got seemingly random symptoms but I had too many of them, and they were getting
worse. I also started to notice that my good days and bad days seemed to come in cycles. 3 days, 3
weeks...I'd be good for a while, then worse for a while, then good for a while. I had already eaten
"clean" and kept myself active, so I decided to try "nutritional balancing therapy" and started taking a
karate class multiple times a week (burns TONS of calories, fyi). They ran some tests for various
vitamins/minerals, and said I had adrenal insufficiency. The diet I was put on was a higher fat (good
fat), higher protein, TONS of veggies diet (basically we just cut out my grains/starches and added in
more fat) but between the diet and the exercise, I became so ill I couldn't get off the couch for about
4 weeks. I had to give up both and it took some time to recover, but I never got back to where I had
been, not even close.
I started studying adrenal fatigue and came to the realization that I had done everything to correct AF
but was still going downhill. I obviously needed outside help. I had tried supplements, diet (years of
it), everything. I became pregnant unexpectedly and was active, even tap-dancing with a major part in a musical at 20 weeks pregnant. I would have these ups and downs that seemed random, but when I finished the musical, I hit a new low and never seemed to come back from it. I just became more and more exhausted. To the point that certain days I could *feel* the energy it took to hold my head up to watch a movie with my kids. The CNM and OB both said I was just depressed and upped my dose of Vitamin D. They wanted me to go on antidepressants, and I refused. I knew the difference between not wanting to do things and not being able to do them. I called a doctor that specialized in Adrenal Fatigue in California after having read through his website, and he basically said that I would continue to get worse, but that he wouldn't treat me because of my pregnancy. No help, no suggestions, just "come see me if you make it out alive" basically.
I had joined an Addison's support group online, and they helped me learn a lot about AI and Addison's, about symptoms, testing, about Hashimoto's, etc. I am SO grateful to these women who supported me and taught me much. They never questioned if I was just depressed or if I was really sick, and they were so kind they WERE the sanity that I needed so desperately. I was getting nowhere with local doctors, my husband believed me and was as helpful as he could be, but it was taking a big toll on us, and when we asked for help from our local church leaders with cleaning our home because I no longer could do it (and my husband was so overwhelmed doing everything by himself), we were threatened as a family and refused help. I was desperate; I was hurting. My whole family was struggling because of this disease and the treatment (and lack thereof) we'd received from doctors and so-called friends.
These Addisonians had been talking a lot about one specific endocrinologist that specializes in
pituitary disorders (Dr. F). In complete desperation, I emailed him, knowing the chances that he'd take me or that I could even get in to see him before delivery (due to travel restriction based on gestation) was unlikely. But I was scared of what a delivery with untreated Addison's might bring (I knew the stats and knew I didn't trust the local OB), so I emailed explaining my situation and sent my current lab work (I had to go to my GP because my OB wouldn't even test my thyroid or iron!). I knew it sometimes took weeks to get a response or get in to see this doctor 3 states away, but I sent the email on February 8th, and heard back via email that same night from his office lady. She was sure he could help me, and suggested I schedule an appointment right away, and was waiting to hear back from him directly. He responded that he did see something amiss in my lab work, and I was scheduled for an appointment and buying plane tickets. My appointment was on Valentine's evening and a friend flew with me because I was too weak to do it alone, and because my brain was too foggy to feel comfortable understanding and responding to everything in the appointment, not to mention I was super pregnant with my 6th child!
I went in SURE I had Addison's Disease, or at least a form of adrenal insufficiency, and even tried to argue that fact. I came out with a LOT of testing for Cushing's Disease. It was, in fact, the low cortisol periods that I was noticing, but it was being caused by periods of high cortisol. You see, the cortisol takes a big toll on your body and overrides the normal feedback system of your pituitary and adrenal glands. While the tumor is actively pumping out ACTH, it can shut down your own pituitary's normal production because the pituitary feedback says there is already too much cortisol in your system. Then, if/when the tumor "kicks off" (who knows why they do this), your pituitary is in a lazy state from not having been working and it can take a while for it to kick back in. This can bring life-threatening lows, but generally it just brings low-cortisol symptoms which are still uncomfortable.
I was unprepared for the change in direction at my appointment. I had the right system and hormones, but I was looking at it backwards, and the more I learned about cyclic Cushing's Disease, the more sense it made, the more things clicked together, and the more I understood about my past and present symptoms. I have cyclic Cushing's Disease. I had read up a little on this about 10 years prior, when my mother-in-law had died from untreated Cushing's (she refused treatment and was a stubborn, intelligent women who got her way). I had read through some information then, with my husband. We had concluded that it was a possibility, but I didn't have enough of the symptoms (maybe half?) and decided that I wasn't nearly sick enough for that to be the problem. How wrong we were! I certainly wasn't as bad as many, but I found that the downhill turns were often sudden and drastic, especially in the more recent years.
At my appointment I was also told I had hypothyroidism. He ordered more of those tests (to get a trend) and an antibody test. I had Hashimoto's Thyroiditis (an autoimmune thyroid disease) and was put on thyroid medication. My ferritin level (stored iron) was so low it was in single digits (he wants it around 60) and he said that had I not been flying home the next morning, he'd have had me in the hospital for IV iron infusions. Needless to say, I was put on iron --lots of it. My vitamin D was still lower than he'd like, despite having been on treatment, so he switched me to 50K iu's of D3 weekly (My OB had chastised me repeatedly for taking D3 instead of D2; Ha ha!).
I had to wait for a while after my pregnancy to allow my body to normalize before doing my testing. I first tested by date (randomly, basically) and got a few marginal highs, but mostly normal test results. My pituitary MRI was read clean. Dr. F told me he didn't know what was wrong, but that it didn't look like it was Cushing's because of the testing. I was not prepared for that, and just ended the conversation. I was emotionally, mentally, and physically exhausted and didn't plead my case. I didn't have the money to test more, even though I was pretty sure I needed it. And looking back, had I asked, he probably would have obliged.
I decided to again try natural healing methods. Nothing worked, and some things (extended juice fasting, for instance) actually made me much worse. Every time I hit another "low", it seemed to become my new normal...and that was scary. I kept losing more energy and strength, more of my mental ability, and each time I couldn't imagine it getting worse, yet it always did. (I still haven't learned this lesson!)
About a year later, after a lot of prayer and thinking, after I'd exhausted most natural treatment
methodologies I felt willing to try, I realized I did indeed need to go back and push for further
testing, and test by symptoms. Mentally and emotionally I was in a much better place, and while I had recovered a bit after my delivery, I had started to again slide downhill despite my best efforts.
I emailed Dr. F to ask about further testing, this time by symptoms, and there was no pushing or
arguing necessary! He gave me more sensitive testing this go round, and told me to test as much as it took. He believed me! It was as if the way just opened up for me this time. I was uninsured, but I applied for the Cushing's Assistance program through NORD (The National Organization for Rare Disorders) and was accepted. They offered to cover the costs of testing, doctor's appointments, and travel needed for the same, that would lead to a diagnosis of Cushing's Disease. I was in public when my husband called and read me the letter, and I started bawling right then and there in the shopping isle. It was an answer to a prayer I didn't even think to voice. I then called to share the news with family and friends and bawled again, scaring yet more customers!
Tracking my symptoms wasn't a very easy task. I went totally OCD on them, and still I was only somewhat successful in my efforts. I could get the overall trend, but the day-to-day was confusing as all-get-out. My testing was also complicated by living in Alaska. I could only turn in tests 4 days a week because they had to fly out to the labs in Seattle, WA and beyond. It took about a month to get each result back. Add to that a head cold that killed my cortisol levels for 6 weeks, and it took me a few months to get sufficient high labs even with my 2-page-wide spreadsheet of symptom data.
In that time, I also made friends on the Cushing's-Help website and Facebook groups. I learned a LOT of things from them, and one friend in particular likes to "read" pituitary MRI's the way I like to "read" fetal ultrasounds. She looked at my previously "clean" MRI and said that in her lay opinion, it was anything BUT normal. As a favor, her neuro-radiologist also took a look at my MRI, and was so kind as to send back pictures with ARROWS of pituitary adenoma's and suspicious areas on my MRI to forward on to my endocrinologist. As it turns out, my doctor hadn't read the disc himself and had just read the report. He looked at the disc and agreed it was not normal, and sent me a message stating I needed a new MRI (it had been over a year at this point and my previous MRI still had some of that post-partum "rainbow" shape to the pituitary) and that it should be read by a neurosurgeon this time around. JOY OF JOYS! This brought me even more hope! He said SURGEON, not just himself...that meant I was getting so close to that diagnosis and surgery clearance --to getting help.
I scheduled my MRI trip (can't do a 3T dynamic here), and decided to schedule a face-to-face with my endocrinologist again while in the same city. NORD paid for the flights, reimbursed me for the cost of my doctor's appointment, paid for the MRI, and paid for my hotel room. My husband came with me this time, and it was the best doctor's appointment I've had in my life. I was still nervous that somehow it wasn't enough, or that the MRI done the day before my appointment would miraculously have become normal again. That was not the case. My MRI showed two adenomas on opposite sides of my pituitary amongst other things, and my 7+ diagnostic-level high labs were sufficient...and it felt AMAZING!
Who knew we'd be so excited to hear I was diagnosed with a deadly disease? That we'd shout for joy and clap our hands at finding multiple tumors in my head? I had a smile that wouldn't go away. The medical student shadowing my endocrinologist hadn't seen the diagnosis side, where patients are so relieved to have an end in sight, to finally be getting help and have a chance at getting better, that they are happy! I also wore my "Does my pituitary gland make me look fat?" shirt to this appointment, so we were joking, taking pictures, and having a grand old time. He gave me permission to share the picture of us, and without prompting pointed to my head for the next picture saying, "It's right HERE!" Dr. F is generally stoic, dealing with very ill people, with a very serious disease, and he is often their last hope at life...so I feel myself privileged to have had the opportunity to see him in-person for my diagnosis appointment, and to see this other side of him. I hope he felt our gratitude as well.
The "pick whose going to cut into your head" decision took a while. I was offered 100% coverage through a quality hospital and with a quality neurosurgeon for anything done at their facility, but the
endocrinologist there wanted me to start my testing process ALL over again with them, at my cost at
home. I was not willing to start over after all that hard work and with as quickly as I was
deteriorating, so I decided to wait till January when the new health coverage laws were in effect and I
could again get insurance without preexisting conditions clauses. I was able to be referred to my
first-choice of neurosurgeon's and am on Ketoconazole to help lower my cortisol while I wait. And it
just so happens that my brother-in-law has recently moved with his family to this large city and offered us a place to stay before/during/after surgery.
Keto has it's benefits and side effects, but I'm glad to be on it while I'm waiting. I feel like it is
giving me some practice for what things will feel like and when to act in the months following my
surgery. I won't get a set surgery date until January 2nd after my insurance is fully in effect, but my
surgery is penciled in for January 24th right now. I'll update after my surgery when I am able.
This week I returned to being treated by a GP I had had about 6-9 years ago. He is very experienced, keeps up-to-date, and takes on the more difficult cases in town. I needed someone who would not be intimidated by all the intricacies of a Cushing's Disease diagnosis and the ins/outs of surgery and recovery (since that is very much a long-term process), and I especially needed someone who would learn about my illness and needs during recovery, so that in an emergency he could make quick decisions. If I show up in the ER in adrenal crisis, I can't have a doctor that will wait around for a response from Dr. F (my endocrinologist 3 states away) before acting...I want to live! So, I set up an appointment, and it took about a month to be able to get in to see the doctor himself (others in his office could have seen me sooner), but it was well worth the wait!
I was worried that he would question my diagnosis, question my endocrinologist's credentials, not understand the breadth and depth of it's effects, not anticipate the long recovery time and need for continued monitoring and treatment post-op, etc...BUT I WAS WRONG! I guess you get used to the nay-saying, judgmental doctors who automatically assume you're just fat and lazy, read too much on the internet, saw a quack, or are simply mad that you'd seek a second opinion, so when you see a "good" doctor that is both knowledgeable AND supportive, it is like a window opening from heaven, replete with golden beams lighting their face and the heavenly choral "Aaaaaaah!"
He did initially ask about my endocrinologist, but was more than happy seeing the positions included in his signature to ask no more (he has a CV of GOLD!). He stated that he LOVED the thorough, well-organized dictations from my endocrinologist. He did ask about my symptoms and wanted lots of detail (symptoms at time of onset, symptoms now, what signifies a high and a low, etc), but it really wasn't coming from a place of doubt, and honestly didn't even feel like he needed to know that to be able to treat me in the future...it *felt* like he just wanted to know more, to have more information about a rare disease and what it looks like in real life. He even went so far as to say, with compassion, that I must have been through a lot, with doctor's wondering what was wrong with me, people treating me like there wasn't anything wrong, etc. !!! If I weren't trying so hard to keep my brain and words in check (the fog, memory, and word recall/saying the wrong words are SO hard at times), I probably would have cried right then and there. Yes! I told him that years ago, he actually tested me FAR more than anyone else, looking for CAUSES for my unexplained bruising, CAUSES for my unexplained tachycardia...when other doctors rarely saw more than one symptom and generally tried to treat just that, if anything. He was the doctor that gave me the typical "when you hear hoof beats, think horses not zebras," after having done the testing above, but I was nice and did not remind him of that. (Now, if it were the OB I dealt with 2 years ago...LOL!)
Then he asked what I wanted from him (not in a challenging way), and I explained Dr. F's unconventional practice, that I really need a good GP at home for emergencies and the day-to-day that understands the complicated nature of this disease, and we talked about adrenal crisis post-op. He knew enough to make sure I knew there was a chance I would be adrenal-insufficient permanently post-op. We talked a little about being hypo-pit (losing hormone production from pituitary damage -- either due to the tumor itself or the surgery) post-op, and even that there would be no way to know how much they might have to remove till they actually get in there, nor how my pituitary will react till after surgery and some healing. We discussed that often multiple surgeries are required with my kind of tumor(s). AND, since he is the medical director of about 2/3rds of the EMS in town, he did say they don't carry the solu-cortef that I would need in an emergency on the ambulances, but that if I had my emergency injection kit, they could call him directly and get legal permission to administer my medication (You often lose cognitive ability or go unconscious with an adrenal crisis, so we cannot assume I will be able to give it to myself...and while my family will be taught how to do so, we cannot assume I will always be with them). I actually know the medical director (and EMS lieutenant) for the ambulance crews in my section of town, and would have to bring my emergency letter to them so that they are aware of my case and what to do, as again the medical director would need to give legal permission allowing the EMT's to administer the life-saving medication. That was good to know.
And I left with him asking for the before/after onset pictures and detailed symptoms list I made up for the surgeon. He also wants to see my most recent MRI. In the end it cost a boatload of mula, but it was SO worth it. I feel like he is one that will enjoy the challenge and love the rarity of my case, and will thus SEEK the knowledge needed to treat me. I feel like I will be in good hands in my home town of "Nowhere, AK."
The Magic Foundation's Cushing's Convention's location and dates have been announced!
April 24-27, 2014 in San Antonio, TX
There are more details yet to be ironed out, but every year they have medical professionals speak and educate about Cushing's disease, it's diagnosis, treatment, recovery, even living with it and the changes it causes. Last year Dr. F (my endocrinologist) and Dr. McC (possibly my neurosurgeon) both spoke and I'm SO sorry I missed it! I don't know who it will be this year, but I am SO hoping that everything will work out for me to be able to attend! And as amazing and needed as that education is, what is drawing me even more is the chance to meet other Cushies...to be surrounded by people who just get it. I've "met" many online, and it would be amazing to finally get to actually meet them in person. Bring on the zebras!
You wouldn't expect someone who just drank alcohol to not react to it, would you? No, that'd be silly. It is a chemical in their body, and once there, they have no control over what it does to them. Someone used to the effects of alcohol over time would acclimatize to it to a certain degree, but they cannot fully stop it's affects on their body or their actions. Now imagine not having control over when the alcohol is introduced into your system, or how much is introduced, or how often. Imagine not knowing it was coming until you were already tipsy or drunk. Imagine not knowing how long you would stay drunk and not knowing when to expect the crash and hangover that would inevitably come. Imagine getting to the point where physically you are always in one state or the other --drunk or hung over. Now, tell THAT person they can choose not to be affected by the chemicals raging through their system. Imagine how that person, force fed alcohol, would feel to be told it was a simple choice they could make to not allow themselves to be drunk or hung over?
I was told a few days ago that the emotional upsets I feel due to the hormone cycles caused by Cushing's was something I could control. "It is just like PMS, so you can recognize it and just not give in," is what I was told. At the time all I could really say to this person is that it is like 100 times that of PMS. They obviously still have not learned about my illness and don't seem interested in doing so, which hurts. But the reality is, PMS isn't a very good comparison. While both may be hormonal, that really is where the likeness stops. It isn't natural, it isn't predictable, it isn't controllable, it is an instantaneous storm that sneaks up on you and flies away just as quickly, but when it is gone there is still no "relief," just a different set of symptoms and emotions. There is no "calm" in this storm, you are either at one extreme or the other.