Ride for a Q'ure!

One of the biggest (pun intended) and worst parts of Cushing's Disease is the weight gain. What people don't understand however that as easily as you can gain weight with Cushings because of high cortisol levels.. that's just as hard as it is to LOSE weight!!! The media has poopoo'd the idea that weight gain can be because of hormones because for awhile so many folks tried to use that as an 'excuse' and likewise with genetics. "I'm fat?! Well it's not my fault, I have bad genes and my hormones are crazy!".. so the shift was taken away from these ideas so that the individual again had to become responsible for their choices, for their weight and for their overall health. However, there are instances where weight really is beyond your control: Cushings. For myself and nearly all of my fellow Cushies, the harder you try losing weight, the faster you gain. Now I'm not saying the because of this you get free reign to eat whatever you want and never leave the couch, on the contrary, doing so would just leave us all even sicker than we are!! Because of our disease we try our hardest to do whatever it takes to improve our health since the disease and tumors seem to be running the show!!

So anyway, now that my cortisol WAS coming down, my endo had told me that it was time to try exercising again. In the past I've tried when my cortisol was very high and all that happened was that I gained weight. As a result she told me to stop trying because I was doing more harm than good. Now that it was lower again, I got the go-ahead to try again. I tried walking the treadmill but without proper help to manage my pain, walking is just too damn hard so I got on the bike one day. (We have a recumbent stationary bike). And to my surprise, it was much easier to ride for a few minutes than to walk! Why didn't I think of it sooner?! But I knew my motivation would run out quickly, so I came up with the idea for "Beth's Ride for a Q'ure!" I want another tattoo very badly, but of course don't really have the money for it, so I thought that I would ask for help! So for every 50kms that I ride, I ask for a sponsor to give me $10! By the end of 2000kms, I should have $400 which would be about enough for a tattoo and the one I want to get is a portrait of Quincy, hence the "Q'ure" part... I'm riding towards better strength and health and also towards a tattoo of my Q! I will likely get it on my left arm somewhere. That's where he sleeps most of the time, tucked snuggly under my left arm.. so this way I will always have him with me even when he's not with me! As I write this I'm at 47 kms, so very close to meeting my first goal! This challenge has really helped keep me motivated because I know that I will not only be letting myself down if I fail, but now I am accountable to many other people too! So I think I can, I know I can, and I WILL!!


Here's a link to my challenge on Facebook:
http://www.facebook.com/events/277514258980880/


I still need sponsors, so please sign up to support me, or you can just say you're "Going" to show your support as well! Every little bit helps keep me peddlin' away!

A challenge was put out to get people blogging and raising awareness for Cushings, so I thought it was a really good time to actually get busy here and post an update.

Since I last wrote, quite a bit has happened. Well, relatively speaking that is! My numbers WERE starting to look good after I increased the caber to 3.0mg 3 times a week and I was even able to pee a normal pee! So very exciting, but like with everything else in my life, it was also short lived. My numbers started to go up again back in January and they've slowly been on the rise since. At my last appt my endo told me that if my numbers went up we would look seriously into getting the new drug, SOM230, aka Pasireotide. Well, I wasn't feeling good in February and actually thought I was low, so I went in to test and instead of being low, I was running really high again. I panicked and my endo just told me to be patient, so I gave it a bit of time then tested again in March and I just keep going higher. I even did two 24hr urines (my most hated tested) a week apart and my cortisol jumped 100 pts from one week to the next. :( I got a copy of my blood labs and it showed my cortisol up, ACTH up, thyroid low and blood sugar up.. so I called in because I was not going to wait another month and a half for my scheduled appt and I got in to see her last week. She agreed that things were not on the right track anymore. :(

The Plan now is to get SOM230. We thought we could get it fairly easily, but somebody gave us the wrong info so I'll have to apply through "Compassionate Use" which from my understanding simply means that you must apply to the government for special permission to use a drug that's not available here yet. The fact that it's been approved overseas will really help my chances, and I can also prove that I've had two surgeries, tried almost a year of Mitotane, tried ketoconazole many times and now I'm coming up almost 2 year on Cabergoline and none of them have been long-lasting cures. So anyway, my endo nurse started the paper work already for me and they just needed to also know my A1C (the biggest side effect of the med is raising BS) and they also needed a current EKG which I rushed to get done - and the QT Prolongation is what they were looking for specifically and apparently mine was normal! I'm hoping very much that this means I will have an easy time getting this drug because I need it badly.

In the meantime waiting for SOM to come through - I've started metformin. My sugar has been creeping up slowly and it's becoming something we can't really ignore anymore. You have to admit that I've been very lucky in this regard. One of the Hallmark symptoms of Cushings is high blood sugar and for almost 8 years I've avoided it. My hatred for sweet foods and many carbs has probably helped me a lot! Now though my endo said if she just looked at my A1C she would say I'm diabetic, although from the bit of daily testing that I've done, it hasn't looked too bad. But because of trying to get SOM230, I really can't afford to have messed up BS going into it considering what it seems to do on it's own!! I've started with just 1/2 of a metformin pill once a day and will slowly work my way up on it. As soon as SOM comes though, I will stop so that we can see what the new drug does to my BS on it's own. I am also going to push the caber past the max dose. Up until now I've been taking 3.0mg 3 times a week, and this past friday, I took my first dose of 3.5mg and will keep it at 3.5 X 3/week for a little while and move it up again after that. She said to aim for 12mg/week and stop there but I'm hoping SOM comes before that! Once I see how the metformin goes, I'll also consider adding back keto again. As much as I hate it, the "start-up" effect of quickly bringing cortisol down can't be denied, so to just shock my cortisol and scare it down will be good for me. :/

And now I wait.. just anxiously wait. I need this new drug to come fast and more than that, I need it to WORK! I know surgery is always an option down the road for me.. but I'm really not ready for that. I just need these meds to WORK!!! 

Steady as she goes..

So I had my endo appt last week. Pretty darn BLAH! I guess I was hoping for something big to happen and nothing really did. I had to have a form filled out for my mom's insurance company (who threw me off the plan AGAIN!) so I got that done. I also spoke with her about all that I'd discovered throughout my package sending mission. I had talked to the nurse C and gave him Dr. L's number in Seattle to call to find out about the Pfizer trial and guess what... big surprise... C didn't pass along the entire message!!!! I was so angry but at the same time it was completely expected otherwise I figure I would have heard something much sooner. So in the end, she never talked with anyone.

BUT.. the great super magical news was that I PEED MY FIRST EVER NORMAL PEE in over 7 years! WOW! It was 228 (or very close to that.. forget now!) and normal is 50-250! It was in the normal range for once! Couldn't believe it! My blood still isn't showing normal levels yet.. I don't really know why that is, but it's still more than double the high end of normal and my ACTH is still more than triple what it should be. My endo thinks that it's the radiation kicking in now because my numbers are still changing without my dose of caber changing.

So the plan right now..? Wait. Wait wait wait! I hate waiting. But since everything is moving in the right direction for the most part, we're going to wait and see what happens. I know for sure that I will not rush to surgery if something is working now.. there would just be no logic behind surgery at the moment, so that's off the table again. I think I will still get copies of my new MRI to send away though and see what just a couple of the drs think.. Mostly interested in hearing from Dr. P and Dr. M at this point. The others wanted to complicate things, but these two were prepared to just go in, scrape things out and be done with it. And the report from the local radiologist said that's only about 1mm left of "stuff".. it's impossible at that size to see if it's tumor, remaining gland or some of both, but it's "rimming" the bottom of my sella. Also, the top of my sella is now caved in because it's mostly empty in there, so that's a really positive thing from the sounds of it. I'll probably have another scan in about 6 months time. And 4 months from now, I have my next endo appt. If my cortisol stays the same or goes down more, I'll stick with caber and try to decrease my dose (staying at this high dose will eventually lead to a heart valve leak.) and I also talked to her about trying growth hormone. We've talked about it many times before, she's against it, and I've never cared too much either way, however now that my cortisol is down, I really feel that even a low dose would help me to rebuild muscle, so she said that if my cortisol stays down, she'll let me start it! Annnd, if things should happen to go the other way again, she'll start me on SOM230 which she found out that we can get now! Woot! So either way, there should be some changes coming in 4 months.. hopefully it'll be a good thing either way it goes!

So if you're looking for me.. I'll just be waiting around.... :P

Don't say it!

Well, I can honestly say I don't hear some of these things as much as I used to, but I can sure say I've heard them all at some point in the course of my sickness. Unless you've walked in my shoes, you'll just never know, I understand that, but that doesn't mean you have to be an uncaring asshole, does it?

I'm lucky I get to stay home in bed? How's that? Yeah, maybe for a day or two, or a week, tops.. but do you know how badly I wish I could get out and do things, just live? Do you know how much I wish I could go to the store for myself? Walk my dog? Play with my nephews? Have my own kids to take care of and play with? Buy my own food, clothes, etc? I rely on my parents for this still. The last time I saw a movie in a theater was in 2005. Since then, there's been times that I COULD have gone, but seriously, how can I justify going to a movie to sit in pain for 2 hours (not counting driving time which is also painful?) Any enjoyment of seeing a movie would completely be ruined by the torture necessary for sitting through it.. the benefits just aren't worth it. And oh, how I wish I could just do whatever I wanted.. I'd be back in school for sure, especially considering I only need two more classes for my degree. I've been saying it for years now, I'd work at McDonald's for the rest of my life if it meant I was healthy enough to actually do the job!!!

Before I got really sick and had to quit working and going to school, I was constantly complaining that I just wanted a day off! I was working M/W/F as scheduled shifts, had classes T/TH, but was picking up as many extra shifts as possible which at times (especially the last year) meant I was working M-Sat (I refused to work Sundays!), and whatever time I wasn't at work or school, I was doing homework, and actually, I always had textbooks with me at work and between calls, I was always reading and taking notes. I used my work holidays to write my exams and I used my school holidays to work more!! I took as many summer and spring classes as I could and I lived on this schedule for two years before I quit everything. I was completely burnt out, there's no doubt about that, but I was sooo close to the finish line, that I just wanted to get it all over with. Heh, so much for that.

Just pray harder. Lmao. Heard this one too. I was told I wouldn't be sick anymore if I just prayed! RIGHT! So THAT'S what I've been doing wrong all these years! I forgot to pray!! Seriously, for the amount of people who have prayed for me over the years, I should be healthier than a horse, and I should probably also live until I'm about 201 years old, at least. Yeah, I'll just pray a little more. (Note: I don't believe prayer will hurt my cause, however I certainly don't believe it will do very much in helping it!)

*sighs*..

Not on the list but heard a lot.. "Are you better yet?"... sometimes it's asked with genuine curiosity by someone who you've not talked to in awhile - in that case it's fine. But more often than not it's asked with an undertone of "Are you even trying to get better?".. "You couldn't be THAT sick!"... one of the most annoying questions that also goes along with.. "How are you?" Am I better yet? Hmm.. if I was better, do you really think I'd still be stuck at home, unable to work or go to school, or go out, or have fun, or do ANYTHING?? If I was better, I guarantee you I would not still be doing what I've been doing for the past 7 years!!!!! And 'How am I?'.. well which answer do you want? Do you want me to tell you the truth? To tell you how much pain I'm in, to tell you how horrible, weak, sick, and tired I feel, to tell you how frustrated with life I am, to tell you how sick of fighting for my life I've become, to tell you how jealous I am of the things other people get to do, to tell you how hard it is to do anything even showering or going to the bathroom or feeding myself, to tell you how lonely and miserable this disease can be, to tell you of all the dreams I can't achieve, to tell you all this? Or do you want me to put on my best smile and say "I'm okay, I'm good, I'm fine, I'm alright, I'm great, I'm swell, I'm hunky dory, I'm super".... which do you REALLY want to hear? I bet it's the second one. It's almost always the second one and because *I* know this and because *you* know this.. why do you even waste your breath by still asking? You could ask me if the sun rises each day, and we'd be just as far ahead at understanding how the world works. 

(Disclaimer: This rant is not directed at everyone in my life, chances are if you're actually reading this, it's NOT directed at you.)

Wait wait wait..

Getting so tired of waiting. After all that excitement before, this sucks! I did hear from another dr, from Dr. BERGSNEIDER at UCLA on Wednesday, November 23/11.. he said he thinks he could help, BUT, I need to send a cheque for $350 if I want to talk to him on the phone about it!! I'm thinking.. no? I've heard from 9 out of 11 drs now and he's the first one to ask for money! I was just speaking to the receptionist and she said "We received your package and I'm calling to see what you want from us?" and I felt like saying "DUH!".. I started to say I was looking for the dr's opinion and she cut me off saying "well, I can schedule you for an appt to come into the office".. I said "well, I live in Canada" she said "I know, so you will have to come into the office".. (Now I'm thinking she has NO CLUE where Canada is!!!), then I said "I'd just like to know if the dr even sees anything that he could do?" Her: "the dr has looked at your MRI and thinks he can help so, you can either come in for an appointment, or you can mail a cheque for $350, and then you have to email what's wrong with you and be as detailed as possible (I sent 4 pages of my history typed in a 9pt font - that's not enough??!) and a list of questions you want answered, and then the dr will call you back after he finds the answers to your questions, so it's up to you, but if you come into the office, you don't have to pay because insurance covers office visits".. now I'm trying not to laugh because the cost of a trip there would be a hell of a lot more than 350! So I just asked for the address to mail the cheque to just incase and thanked her for her time, lol. And when she gave me the addy and reminded me that they're in LA, I immediately thought.. "Hmm, dr to the stars, guess it makes sense I'd have to pay for their concierge services!" LOL! So at this point, I don't even intend to contact him again. If he can't even speak to me on the phone, I don't see him as having any huge interest in my case. I also never knew much about him to begin with. *shrugs*


I also finally heard from my endo's office last week. I just talked to the nurse who informed me that my endo has been emailing back and forth with my neuro. That REALLY pissed me off. When I told her about everything I was doing, I told it to her with the expectation of dr/patient confidentiality. Doesn't that apply here? I know they're both my drs, however there was nothing directly impacting my health care to make it necessary for my endo to tell my neuro, right? She also knew I had no intentions of telling him and that's why I asked her to order the MRI instead of just asking my neuro's office who would usually schedule them. Makes me so angry. I know it can't be undone at this point, and I also know that I still need her help, so for me to get upset with her, I would probably be the loser in the end anyway. My neuro apparently did highly recommend Gentili in TO if I was to go ahead with another surgery which I found odd since he was so adamant about not doing any further treatments?

Yesterday I received a huge package of all of my records! So, my endo did come through on that part. Unfortunately she wasn't able to obtain any of my disks from CTs or MRIs. I sort of expected that. They won't release them to anybody other than the patient, for a small fee of $50 a pop. Ugh. It's been quite the interesting read so far. In the records I got copies of most of the letters of correspondence between my family dr, my endo (old endo) and neuro. For one, my old endo tried to sell the other two that it was just PCOS I had even after my family dr ran tests showing my cortisol was high AND the tests my endo did disproved PCOS. My first ever cortisol blood was 1280 (norm 50-300).. months later when I was sicker, I had my first and only diagnostic urine done with the results of the 17OHs being 125 (norm 17-52) and my 24hr UFC was 9866 (norm said "up to 250")... so I was pretty damn sick at the time!!!

Then there was a letter from my neuro to my endo saying that I was "twitchy and wanted treatment".. what the hell does that mean?!! How about I was SICK, DYING and NEEDED treatment?!! Then a real interesting one was after I had already had gamma knife the first time and my endo wrote to my neuro basically saying that she only wanted him to consult, not to treat me! She wanted me to have a BLA and he wrote back saying that a BLA would have probably caused instant Nelson's and he felt gamma knife was the only reasonable treatment.. so it's nice to know that my neuro had my best interest at heart back then. The initial reading on my first MRI said that my pit was pushed over to the left and also that it appeared to have tumors diffused all through out and that's why my whole gland was radiated because none of it looked like it could be saved. It's just so weird reading this stuff now because back then, I wasn't educated about any of this, I had no idea what Cushings really was. At the time I saw my neuro for the first time, I knew one thing and one thing only, I was dying and needed help, whatever that help was, I wanted it NOW so I really didn't ask questions, I just accepted what I was told. I'm not sure I would have or could have done things differently even if I knew more... well, I guess there's not much point to speculating the what if's since I cannot go back to undo any of it. Oh, and my endo apparently told my neuro I was a diabetic, well controlled on meds?? Wtf? I've never been diabetic nor have I been on meds for it!!! Ugh, just yet another reason I'm happy to no longer be dealing with her!

I think that since I had a cold a little over a month ago, things really got shaken up in me. I've done labs twice now and my cortisol that was hovering around 900-1000 (norm 50-300) for the longest time has really been coming down. On November 2nd my cortisol was 665 and my ACTH was 9.7 (norm < 3, it was up to almost 30 before!!) and then after my cold on November 23 my cortisol was down to 554!!! I'm pretty sure my ACTH was still 9.7 for this one too, can't remember now and forgot to write it down. This past week I've felt like pure hell though, so weak, barely any appetite compared to usual, extreme pain, especially the pain in my side back with a real vengeance, and my skin is all clearing up, LOL (wow, one good thing in the mix of it all?! Why bother?!) I've also been doing some kickass sleeping for the most part which is nice after I went for weeks and weeks of only sleeping 4-5hrs per 24hrs. I'm really hoping that this means my numbers have come down even more, although I've not been in the bathroom much which usually happens with dropping? I need a damn home testing kit! I'm really starting to believe though that sending away my info to drs really scared my pit/tumor/adrenals, lol.. they started to worry about what I might do, and thus started to cooperate a little more! haha!!

In the meantime, I'm still waiting to hear from my endo again. I gave the nurse Dr. L's number in Seattle and she was supposed to contact him to find out info about the Pfizer trials. If my numbers keep going on this downward spiral, I won't qualify for the studies anymore, but it would be really nice to at least have a little more info, and also to be able to quit caber and see what happens and hopefully get into a trial. SOM230 looks much more promising for a long time 'cure' than does caber, especially when caber can cause me some serious heart problems with long term use at these high doses. I would like to get off of it if there's a better option out there. Ugh.. hurry up, dumb endo! I wish they would put themselves in our shoes, the patients'.. perhaps they'd see the urgency in things then.

Sooo... I wait.

I've adopted a new motto to live by... while I have many already, haha. But now I'm living strongly with the notion of 'when life gives you lemons, make lemonade'... I'm making a hella lotta lemonade! Drink up!

Rice vial!

I had to take my mom to an appt, and while I waited, I took the chance to go to The Forks and finally get my rice vial! I've wanted it for awhile, just never went because it's so hard.. it was hard today too, but I needed to kill time, lol.. so anyways I got it! I was telling the girl what I was looking for, a vial with blue and yellow for the disease I have. She asked me all sorts of questions about it and told me about her sister who just passed from breast cancer that spread to her heart and liver. Then she said, "my boss is just outside, I bet he'd make one for you right now!".. so she went and got him and he was thrilled at the idea of making me a custom vial. It even took a couple tries, but he didn't care, he made it and didn't charge me any extra! The rice grain inside says "HOPE" on two sides. HOPE!

This is the place and that's the guy in the pic who did it for me!
http://www.bayshoregiftsinglass.com/

A need a nap!

Well, today started off with a bang! Or rather, a ring! Dr. Prevedello from OSU called bright and early this morning, woke me up in fact! He started off by asking a few questions, then just cut to the chase and said he wanted an IPSS, and then he would do surgery. He said the results from the IPSS would take time, so I would have to make two trips there, but that's it, he would do the surgery! So while I slowly woke up and started processing things, I began thinking, "oh no, he's THAT one!"... he's the one I've feared who says "haha! They can't fix you, but I will!".. everything he was saying - it was all just too picture perfect and he was making big promises. So I asked him why he feels it would be so easy when I've been refused by a few other surgeons and isn't he worried about the fact that I've had so much radiation? He said that it's certainly a risk, but that because of how he fixes leaks, he wasn't worried very much about it. He said he takes a piece from inside your nose to patch it up. He told me just last week he operated on someone very similar to me that had radiation twice and the surgery was a success.. he tooted his own horn some more with various other statistics as well. He asked my age and told me that it's upsetting to him that I've lost so much of my life already, and he wants to put a stop to that. I also asked him about more radiation, and he said a big "NO WAY" saying that with the doses I've had, I'm looking at other kinds of tumors and cancers already, and I could very well lose my vision if I had more radiation. So that wasn't reasonable. So then we talked a bit more, I asked about financial assistance and there are payment packages, but he wasn't too sure of specifics. Then I asked if he knew about SOM - wasn't familiar, so I explained it a bit and he said that he understands my wanting to try it. Then he kinda just said, "well, whenever you're ready, I'm ready!".. and he just mentioned the IPSS again. And a light bulb came on over my head. I DON'T WANT AN IPSS! I realized that no dr needs one because what I want is someone to just go in, regardless of which side things might be on, and just scrape it out, so I told him that and he said "you know what? you're right!". So he said if I decided on doing it, he would just do a radical complete hypophysectomy, which in simple terms means, he would go in there and scrape everything out like gutting a pumpkin!! This made me very happy! He had already said that it looked to him like I had a tiny shriveled pit with a small tumor under the right side sitting on the stalk, and then he realized that my pit isn't producing any other hormones anyways, so there's no point trying to salvage any of it, so he agreed, if I decided to move forward with things, he would just go in there, and scrape it all out!

So I'm not sure what I'm thinking now. I still would like to hear more from others, primarily Dr. Mayberg and Dr. McCutcheon. But it's sounding like although very dangerous, surgery IS possible. It's a realistic thing however to believe that a tumor could still come back since it's pretty common with these tumors and because I seem to be good at making them!!

I also received another phone call from Dr. Ludlam this morning. He was in touch with his Novartis contacts and they refused me. Because of how they're handling this trial this time, they had to refuse International Compassionate Use patients, aka those who've had radiation - me. :( But he was given the contact info for someone at Pfizer, a Canadian drug company and he called them. They said I may be a suitable candidate, however they only deal with dr referrals, so I need to have my dr get me into the trial. So now I'm waiting to hear back from my endo and hoping like hell that she'll help me. 


I don't know for sure if I want to try pit surgery or not yet.. I feel like there's about as many pros as there are cons, if not more cons. But regardless, I feel like it would be foolish to go to surgery without first trying SOM230 because a) surgery could kill me, and b) because I could have surgery and develop a new tumor soon after, for sure not be able to have more surgery and need a medicine anyways! So I truly feel like trying SOM is my best next step. Surgery will still always be there, and hey, the technology may even become better by the time I'm ready? I just don't know. :/ 


I also got two consent forms in the mail today.. my endo apparently agreed to help me locate some of my test results! It's just from two places though, so I'll still have to take on some costs, but this will save me a couple hundred dollars at least! Yay! 


It's funny how many messages of support and 'admiration' I've received lately. People have said how proud they are of me for fighting and standing up for myself, and some people have said "I wish I could do that for myself too!".. the stupid part is that *I* have been telling others to do this sort of thing for years, but I never did it myself. I have sat patiently waiting, nodding my head to my drs, and just letting time pass, but not doing 'everything possible' like I have always told others to do. *sighs*.. well, I suppose the important part is that I'm doing something about it all now. And I hope others will not only be proud of me but also learn from me and learn to take action instead of waiting. One thing I learned quite awhile ago is that Drs won't come to you - you must go to them. If you have a test done, unless there's something seriously wrong - they don't usually call you right away with results - if you want them, you must call! Also if you miss an appointment, they have 30 other patients waiting and ready to take your spot. So if you're not happy, oh well! You can be replaced. You're just a pay check to most drs - very sad, yet very true. My uncle always says "the squeaky wheel gets the grease" and I used to not believe it, but now I do. I used to think that if I made too much noise, I would just piss people/drs off and then they wouldn't help me, but with this bold move I've made to seek out help, I've been totally shocked and amazed at how making noise really gets attention! I've also done myself a service by educating myself as much as possible so that I can speak knowledgeably and that seems to have gained me a level of respect with everyone because I know what I'm talking about!! I also have labs and test results that clearly support my case.. the blood/pee don't lie!! So.. I guess for anyone seeing this, if you end up in a position like me.. educate yourself, and take risks.. nobody else will fight for your life the way YOU can. And don't sit quietly waiting for help to come to you, GO FIND IT! Never lose HOPE!

This totally feels like it's become a full time job! Between phone calls, updating family and friends, locating paper work, filling out forms, sending authorizations, emails, mailing packages... geez, I wish the pay check mirrored the work! Although - if I got my life back - I suppose that's payment enough. :)