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Lisa (Lisa), Undiagnosed Bio

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undiagnosed4

 

44 yo female
have been overweight for a while
always fatigue, muscle aches, pain/joint all I related to weight
only history is hypothyroid been on synthroid since 15ish
recently had UTI that was resistant to lots of abx then developed a bronchitis to pneumonia
then the UTI came back was on prednisone at start of pneumonia for 14 days then developed pain in left side and arm cardiac negative and high blood pressure out of blue
been worked up for carcinoid syndrome – neg
VMA and metanephrine – Neg
Lupus – neg
they have no idea why bp so high all of sudden i have palp with it
always notice muscle weakness I never have any strength
extremities tingle at times
but face has had horrible red butterfly redness dr doesn’t like
now wants me to be worked for cushing going to do 24 urine tomorrow
but i have had ct scans of abd and chest and one ct angio of chest showed a tiny tiny adenoma on left adrenal gland the radiologist said so small that they may not even comment on it
i do have the fat in neck/ shoulder/back
i just feel off not myself almost shaky inside i have no desire to do any activity although i know i need to

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Correy D (Cushie Correy), Pituitary Bio

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pituitary-location
In the beginning:

This journey started long before I knew it did. I was healthy for the first 27 years of my life. Around 27 or 28 I started having problems. It started with high blood pressure. No problem, that runs in the family. Medication will solve that. Around 30 there was something more strange going on. I still produced milk even though my youngest was 5. My doctor sent me in for a galactogram (a mammogram with dye injected in my glands). It came back normal. My breast and mammary glands were fine.

Over the next few years came depression, weight gain regardless of diet and exercise, and random muscle strains. My doctor said to try a little harder and eat a little better. I threw my hands up in the air. I had already tried everything and still I was gaining. This went on from 2009 to about June of this year.

In June of 2013 I broke a rib when I was trying to crack my back. June of 2014 I broke another one on the opposite side when I was coughing. Finally, my doctor took notice. All the sudden my previous diagnosis were not individual issues, but symptoms of a bigger problem. Cushing’s disease has a laundry list of symptoms and I had almost all of them. I had already mentioned lactation, high blood pressure, depression, weight gain and brittle bones. I also had other symptoms I was not even aware of. My face had become round and red, most of my weight accumulated in my torso, there was a pronounced fat hump on my upper back, there were purple marks on my belly (striae) which I had thought were stretch marks, my face had become fuzzy, and I hadn’t had a period in at least 7 years.

The symptoms weren’t enough for a diagnosis. My doctor orders labs for hormone levels, cortisol levels, and I don’t know what else (about 5 blood vials worth). These came back with high cortisol levels and enough other oddities that I was referred on to an endocrinologist. This doctor did the first panel of tests over and added a few more. It seemed that everyone knew what it was but no one wanted to be the one to diagnose Cushing’s.

Now there are only a couple of things that can cause Cushing’s. The first is steroid abuse…ummm, no. The second is a tumor either on the pituitary gland or the adrenal gland. These marvelous tests determined that it was the pituitary version because if it was adrenal only cortisol would have been effected. The pituitary gland controls a myriad of chemicals in your body and all my levels were off.

OK, so they were convinced it was Cushing’s, now we just had to see the tumor to prove it…MRI time. I don’t know if you have ever had an MRI but I despise them. Reasons, I am claustrophobic and very large. It was a horrible experience resulting in fuzzy images, but they were clear enough to show a tumor sitting square on my pituitary gland. For those who have not looked it up by now the pituitary is on the front (face) side of your brain, settled in between the major artery and vein in your head, right behind your eye balls and sinus cavity. This is not a convenient place to have a tumor.

The endocrinologist then referred me to a neurosurgeon. The local surgeon referred my case to Mayo Clinic of Minnesota. So, we are talking tests and waiting from June through September. I was told to report to Mayo September 23rd. I was given the impression I would meet the doc and be scheduled for surgery Wednesday or Thursday. This was not so.

I brought a team with me: my sister, Amanda and her friend Athena and my bestie Lauren. We first met with the Mayo endocrinologist, Dr. Abboud. He decided he wanted to run his own tests there before there would be a surgery. He did blood test, urine tests, even saliva tests. In the meantime, I met the neurosurgeon up there, Dr. Von Gompel. He explained the surgery and scheduled it for September 30th 2014.

Here are my Facebook posts from this time:

9/23 First Mayo Update:

I met with Dr. Charles Abboud, Endocrinologist and we did an in-depth evaluation of my symptoms, physical characteristics, and medical history. There are so many things that I have considered normal for me over the past 8 years that are related to this disease. It’s nutso pants.

Anyways, it was determined before surgery they want to do more scans and testing because although it is likely the pituitary tumor is the cause, I may have other contributing tumors elsewhere. This means I will likely be up here longer than anticipated with surgery delayed for a minimum of 3 days to get results on this battery of testing. More to follow…

9/23 Second Mayo Update:

I have now received the schedule for the week. I will have more scans to be sure there are no tumors elsewhere. I will also have various test on bodily fluids, secretions, swabbings and their reactions to different medications throughout the week.

I met with the neurosurgeon, Dr. Jamie Van Gompel this afternoon. This was the appointment in which they gave me the assessment of what the surgery would entail for my case specifically, risks, odds of complications and most importantly a date. The trans sphenoidal endoscopic surgery (I feel so smart) will be next Tuesday now. Until then more waiting…and testing…and more waiting.

Sept. 24

Yesterday was information overload. Between consultations and running floors 1-19 of the clinic multiple times then making extended hotel arrangements and Walgreen’s runs I was exhausted x12.

~~~~~~~~~~~~~~~~~~~~~~

On to today: I am finally closing out day one of excessive testing. Upon arrival at the clinic I turned in samples of #’s 1 and 2 and saliva (all separate, thank gods). Due to my claustrophobia, we opted for wheelchair when using the elevators (I had collapsed yesterday when one got too full on me.)

At 8 am there were 6 vials of blood drawn, 9:30 a chest x-ray, then a info session for my sleep study tonight, next a midsection CT scan with contrast (holy warm sauce) and finally another blood draw for my PM cortisol levels. Whew…donsies!!!

Sept 24

I have difficulty sleeping without a fan. I have not slept well the past couple of nights because of lack of air movement. I was all ready to run to Target and buy one when Lauren was like, I’ll just call the front desk and see if they have them. This is me being used to self-reliance vs actual customer service. My sleep study is saved. Now we’ll see if I legitimately stop breathing.

Sept 26

Friday update:

The past couple of days have been kind of slow compared to the first couple here. Yesterday completed my sleep study and CT looking for additional Timons, results still pending. Today I had a bone density test. This shit gave me osteoporosis. That’s why my ribs kept breaking. Over the weekend, I’ll have more ‘sample collections’ and blood draws and attempt to not be bored to death in between.

On the plus side the weather has been gorgeous, I have had muchos girl/sissy time, and in a town like this survival stories abound.

Have a GREAT weekend!!

Sept 29

Case of the Mayo Mondays:

Today began with another blood test. This one, the lab tech had to get an IV which is generally not an issue for me. This time the guy blew out two veins. The 3rd try he “kind of” a clear one in my hand. Through this he had to do medication injections and blood draws at 15 minute intervals for an hour and a half. This resulted in knots in 3 places where veins used to reside.

Next up was a head CT to map my brain. This was interesting to me. I got another IV (a clear one this time) for contrast dye, nodes stuck all over my face and head, and run through a CT scanner. From this they will make a map of the blood vessels through my head to help the surgeon navigate tomorrow. They removed the nodes but left dots in permanent marker and tape over them so they do not get wiped off before tomorrow. It will be interesting walking around town tonight.

I am done with appointments for the day. Whoop!

The good news of the day: The chest CT showed “multiple healing rib fractures” but no more Timones. Yay!!

At 8:30 tonight I will call an automated system, enter my patient ID, and find out what time to report for duty tomorrow. I must find distraction. I am starting to get anxious. Can it be next week already?

Sept 29 Post 2

Reporting for duty at 5:45 am central.

Tomorrow determines if I get to continue to eat vegetables or become one…

Sept 30 I registered at St. Mary’s Hospital and got settled in. Surgery began at 9:25. I was done around 13:00.

Oct 1

My first post-surgery post

Timone is gone. I am tired.

Oct 2

Hey all, got behind on the updates because a lot has changed very quickly. I have “complications”. Please keep positive energy pointed this direction. I may be up here for a while now.later Oct 2

If medical stuff makes you icky, keep scrolling.

So here’s the run down after surgery. The tumor removal itself went well. They believe they got the whole thing without much damage to the pituitary gland. The two issues that remain are post-surgery my cerebral spinal fluid (csf) sprung a leak and the Cushing’s disease that the tumor caused kicked in.

A few hours after surgery I started dripping/ running clear “snot” from my nose. It only happened when I was upright or leaned forward. The fluid was tested and determined to be csf. Now a person cannot just go around leaking brain juice so action had to be taken. The doctors put in a lumbar puncture and are draining spinal fluid every two hours. This will take the pressure off my head and give it a chance to heal. This means I am here at least till Sunday. If this does not work, they must go back in and manually patch the leak.

The Cushing disease also kicked in full effect today. That meant today with the tumor gone the excess amounts of cortisol my body was used to stopped and I crashed. This would be like a meth head going cold turkey. This morning was spent trying to find the right steroid/ dose to balance me back out. With luck, I will be able to wean off these eventually.

As they steroids are currently wearing off again I’m going to sleep because I don’t really have a choice. NITE ALL!!!

Oct 6

So I know it’s been a while….

The day after my last update they put in a lumbar puncture and connected a drain to it. 10 ml of csf was drained every 2 hours for 2 days. This took the pressure off my brain= no more leakage= time to heal. I have also been sleeping almost nonstop. It seems to have worked, no more nose leakage. They drained 30 ml this morning and will do one more drain tomorrow AM and if no more leakage I will get all my departing instructions and GET TO LEAVE.

Next challenge: re-balancing my chemical physiology.

Oct 7

This morning I woke up in Minnesota, still in the hospital. They stole more blood, drained more csf, and pulled that thing out of my back. Best news of the day: After they pulled out the drain my nose did not start leaking again. This meant I was clear to leave…woot!

Paperwork, discharge instructions, shower because ewww hospital, prescriptions, freedom. Oh no, not yet, doctor appointment with my favorite endocrinologist of all time, Dr. Abboud. So, it took a while but home we came.

I have a fuzzy head but full heart. Thank you all so much for your kind words.

Home at last and then the real Cushing’s journey began.

Home Sweet What?!?!?

I came home from Mayo October 7. Home to me may be considered a madhouse to others. My house contains my children (17-year-old girl, 10-year-old boy), my sister, 3 dogs, 4 cats, and 3 turtles. Upstairs contains my dittos and 2 of the cats; the basement homes my sister, her two dogs, and the other 2 cats; and the main level is myself, my dog (Toby), and the stupid turtles. I was happy to be going home to my madhouse.

Before the surgery I had done quite a bit of research about the symptoms of Cushing’s, the causes, the surgery itself. I had not, however researched much about Cushing’s recovery. While still in the hospital I remember sleeping, in between all the intermittent blood draws, vitals checks, and med administering. There was not much else. Once home I was initially just concerned with watching for brain juice leakage. I was not prepared for reality.

Read reality:

http://csrf.net/doctors-articles/recovery/recovery-from-cushings-and-coping-with-recovery/

My reality also included my madhouse. For as full as my house is I spend most of my days alone. My sis works nights so she is sleeping during my waking hours and gone overnight, the dittos are in school and the girl works nights. The cats are on their respective floors. It’s just me and my Toby since the turtles are not for me. When I’m awake, I look around and see all the things I could be doing if I was mobile. The floors need swept, dishes need done, general tidying and dusting required. It’s not that these things never get done but they could be done faster if I were able.

I have now been home a month. Physically, I was more ok when I got home than now. At that point I was still tapering down prednisone. I was still sleeping quite a bit, especially after dropping my dosage, but by the end of the week I was moving around more. After a few weeks, the tapering was done and I crashed once again. I am sleeping till the afternoon. I am weak to the point that moving from room to room is exercise, painful exercise. I stopped taking the prescribed pain killers so I am depending on Tylenol. Tylenol sucks ass. I also still lose words. Often, I cannot complete a sentence. I know exactly what needs to be said but the term, phrase, or name is completely gone. In my “before Cushing’s life” I was pretty flipping eloquent so this is extremely frustrating. To be honest the whole thing is frustrating. I am a strong intelligent independent woman reduced to incapable and not so eloquent blob.

A series of unfortunate events…the sequel.

I suppose I should start at the end of my last post which was flippin January for gods sake. I don’t know why I felt the need to stop writing when things started getting bad again. Documenting my recovery was so much more positive than writing about a relapse but now it’s time to catch up. Cushing’s is a journey with highs and lows. Jump on the coaster with me.

At the end of January I was on the way over a big hill on the coaster. I was doing water aerobics, getting more mobile, working with dogs again. I had my appointment with the local endo and she was dismissive. She basically said the tumor was gone and I should be losing weight faster. This is the exact reason that not just any endo should deal with Cushing’s patients. They don’t get it. Removing the tumor is only step one. Next is re-balancing hormones, then dealing with all the havoc Cushing’s has left behind. My January cortisol labs had been normal, as in recovered norm which was a recovery from the crash post op 0. It is not usual to be at normal range so soon after weaning of prednisone, but we took it for good news anyways.

By mid Feb I was starting to get nervous. I was starting to feel things, previous symptom kind of things. My skin started to break out again, I had headaches again, and I started to gain weight to spite moving more than I had in over a year. I had a follow-up MRI in February. There was the post op variances they expected and then, there it was, a new 2 mm regrowth. FML!

I did not feel good about continuing with the local endo. I could not shake the feeling she had blown me off as just another fat hypochondriac. My GP referred me down to U of I where I met Dr. Christina Ogrin. Our first appointment she took a whole afternoon to listen to my story. She told me she had never dealt with Cushing’s before but she wanted to help and she would work with her colleagues and research to see where we needed to go from if the tests confirmed a recurrence. We repeated the cortisol and other hormone tests that had just been performed in January and there was the confirmation. My cortisol was back above normal range. Dr. Ogrin contacted Dr. Abboud, my Mayo endo, to get his take on the situation. After consulting the U of I team, Dr. Abboud, and her own research, Dr. Ogrin laid out the options.

1. Operate again

2. Go on ketoconazole and get radiation

3. Try a newer medication (Signifor) to counter the cortisol and possibly shrink the tumor.

As I was just coming off of my first trans sphenoidal adenectomy, I was not eager to jump on that again. I had heard horrible things about ketoconazole so that was not a happy thought. Signifor sounded like my best option.

There were many baseline tests that had to be performed to start this process. We tested cortisol levels from blood, pee, and spit. We did a new MRI (April) which showed Marty* had already grown. I had an EKG and ultrasound of my gallbladder because Signifor can affected the heart and cause gallstones. When we did the gallbladder ultrasound there were already about 9 good sized stones present. At that point it was decided I should have it removed prior to starting the medication. Signifor also causes an increase in blood sugar and since mine was already borderline high they started me on Metformin. They tell me my gallbladder has to come out, a preventative measure since the odds if it causing problems if it stayed were close to 100%. Sweet. Here I am taking it all in stride. If that’s the next step, then that is what we will do. My coworkers were supportive and told me to put my health first. I would not lose my job. Woot!

May came in like a whirlwind. I had a pre-op appointment with general surgery to set up my gallbladder removal. A couple of days after that I was in my garage leaving for work when I lost my balance and fell forward catching myself with my arms outstretched. My balance, muscles, and bone strength had all taken a hit from the Cushing’s so my arm snapped. The break was bad, right above the elbow, there was one clean break and another longer break up the bone. One ambulance ride and many pain pills later I was admitted at St. Luke’s and informed they would have to operate. I am now the proud owner of hardware in my arm.

At this point I was already scheduled for my Laparoscopic Gallbladder Removal (Cholecystectomy) so in the beginning of June we went ahead and did that too. What is supposed to be a simple surgery went sideways when they nicked my liver. I had to have a icky drain for the bleeding. A couple weeks later I went to have the drain removed and everything looked fine. That night I starting to get sick. My temp went up, I started vomiting and my stomach hurt so much I thought I would pass out which would have been a blessing because I wanted to sleep till it was over but I could not due to the pain. I know, run on sentence, but it was a run-on couple of days. My stubborn behind would not go to the doctor because I had just been and everything was ok. Or not…

I ended up in the ER again. They transported me from St Luke’s to U of I because my liver levels were ridiculous high and the local hospital did not want to deal with my issues. Once at the U, I was admitted, poked, and prodded. By the end it was determined that I was passing a gallstone that had gotten stuck on the wrong side of the clip when they took my gallbladder. This can only happen in my world. Who passes a gallstone when they no longer have a gallbladder? This girl.

This took us to July. Dr. Ogrin was out of the country. She wanted me to take the month to recover and get used to the Metformin. We would meet when she returned to start the Signifor. And so we did. Signifor is very expensive as it is rare and there are no generics for it. Dr. Ogrin successfully fought the insurance company because there is no other FDA approved medication for pituitary Cushing’s. The first month I was on it there was little relief. My brain fog was back along with my other returned symptoms and now I also had extreme digestive issues. These were three part. Gallbladder removal itself affects digestion. The Metformin is known to cause such problems. Now the Signifor injections themselves cause nausea. After a month, I got a 2-week reprieve because the insurance company denied my renewal so now we are starting over. I will retest cortisol levels in November to see if the Signifor is doing anything aside from making me nauseous.

I have also spoken with the radiology oncology department at U of I. They have reviewed my case and I am awaiting word on whether they would recommend a single dose (gamma knife) radiation or a five-week treatment. Either way I would continue on the Signifor because the radiation results can take up to a year to show.

There you have it. The last nine months in 1500 words ish. Some have babies in 9 months. Not I, I have a series of unfortunate events.

*I named Timone’s sequel Marty for a few reasons. Marty is the zebra in Madagascar. Zebras are the animal mascot for Cushing’s because doctors have this awesome mantra that is drilled into them when they are in medical school, “If you hear hoof beats, think horses.” Well Cushing’s is one of the most misdiagnosed illnesses because our symptoms may be hoof beats but zebras have hooves too. Sorry for the tangent but it is important to the Marty explanation. In Madagascar 3, Marty has a moment that mimics the overactive distractedness that a Cushie brain knows so well. He sings and dances for his new circus friends. “Afro circus, afro circus, polka-dot, polka-dot, afro!”

https://www.youtube.com/watch?v=aZYFqle7GvA (the submitted video is unavailable)

Radiation Oncology- Dr Smith

I got a call back from Dr. Smith today. University of Iowa is a teaching hospital. As such, they have interdisciplinary case meetings on Tuesdays to discuss the more complicated patients coming through the U. It is a very “5 heads are better than one” approach which I appreciate. In my case, they discussed radiation vs Trans sphenoidal adenectomy. Radiology put the case up and although it is a viable option neurosurgery believes there is a better chance for better quality of life with their option. Each specialty believes strongly in their course of action. Of course, it is all up to me.

The risk of gamma knife radiation would be hypopituitarism (disorder in which your pituitary gland fails to produce one or more of its hormones) Ironically the symptoms of hypopituitarism are like what I am already experiencing with Cushing’s. I could end up on replacement therapies for the rest of my life.

The drawbacks of the surgery are the surgery itself is traumatic, the recovery is difficult, and the failure rate is high. My first surgery left me bedridden for a couple of months. I could not afford to take that much time off again. At this point taking a day off impacts but a month…impossible.

I am torn but I did agree to meet with the neurosurgeon before going ahead with the radiation treatment. I am still processing. Neither is a very high success rate and both have negatives. The drug therapy I am on is a temporary situation. The longest it has been reported to work is 5 years. Cushing’s has a high mortality rate with no intervention. I am only 36 and have an 11-year-old son. Five years is not enough.

What do you do when all options available are just buying time?

Neurosurgery- Dr Greenlee

Today I had my neurosurgery appointment. The surgeon came in, looked at my scans and reviewed my history. This is the same doctor who had been so sure surgery would be better than radiation. He told me this time the tumor is wrapped around my carotid artery. He told me there would only be a 60% “cure rate” by going through that horrendous surgery again. Along with a higher fail rate, it would also be much higher risk of complications or death due to the position of the tumor. Looks like radiation is in my future.

I do have a follow up appointment with my endocrinologist, Dr Ogrin coming up. We will be checking my cortisol (24-hour urine Yay!) to see if the Signifor injections are having any effect. We shall see.

Testing testing…1 2 3

Every Cushie knows the frustration of testing. Cushing’s is one of those really hard to prove diseases. Our hormone levels are tested at every junction of diagnosis and treatment. Cortisol is the main hormone tested for. Cushing’s can affect several chemicals but cortisol is the steroid that causes the most damage. There are several ways cortisol is tested. Saliva- you suck on a cotton swab in between 11pm and midnight and send it off to the lab. Blood- soooo many blood tests, AM cortisol, PM cortisol, and dex suppression. And of course, the pee- most often 24 hour urine.

Every result comes with mixes emotions. When testing for a diagnosis, if you get abnormal results you are happy that you are not crazy, there really is something wrong. So many people are told there is nothing wrong with them for so long, they start to actually feel crazy. When you are testing during treatment and get a bad result, then comes the fear. What next? What does this mean for my treatment options? Am I out of options? This fear is only slightly amplified by the anxiety that comes along as a wonderful side effect of the disease itself.

Results time:

Cortisol, Urine Free – per 24 h Result

175.5 Normal Range

<=45.0 Measure

ug/d

Last week I did a 24-hour urine test. This is seriously collecting every drip for 24 hours, the results of which I got today. Considering the recent consulting appointments, I’m once again not sure which direction to go. The test show my cortisol is still high, not as high as it had been in the past. My last 24 hour was May 10th and 263.4 ug/d. At that rate 175.5 looks pretty good. The question now would be can my body take those levels long enough for the radiation to take effect? Is the immediate result of the surgery worth the 60% success rate if it can’t?

More questions than answers when test results arrive. This makes me long for the days of pass/fail pregnancy tests. At least then there was a definite answer and knowledge of options to follow.

Radio Roller Coaster

“The question now would be can my body take those levels long enough for the radiation to take effect? Is the immediate result of the surgery worth the 60% success rate if it can’t?”

These were the questions I had after receiving my last test results. My 24-hour urine cortisol had still been high. I had a follow up with Dr. Ogrin (endo). She was quite encouraged. My results were still above normal range but were much lower than my pre-medicated levels and my blood cortisol and ACTH were back down to normal range. This meant I got to stay on the Signifor and radiation was still a go.

FF to yesterday. I went to meet with Dr. Smith’s office for my pre-radio-surgery patient education and MRI. We went through the procedure and the nurse stepped out to grab whoever was taking me down to MRI. No one came back…we waited for just over an hour. I have never waited at this office before so I knew it was not good. Finally Dr. Smith comes in. I actually hadn’t expected to see him yesterday so my suspicions were confirmed. He sat down and told me my weight disqualified me from the gamma knife radiation. My options now are the full 6-week course of radiation or the trans sphenoidal adenectomy. The same surgery that I was told there was only a 60% change of success. To me, this is just not a viable option.

Every time I think there is a plan, it gets squashed. Have you gotten whiplash from my roller coaster yet? This disease got so far gone that I am too fat to be treated. I would not wish Cushing’s on my worst enemy. This thing might just kill me. All of my systems are stressed from the extra weight. My blood pressure cannot be regulated. Signifor has made me officially diabetic. Grrrrrrrrrrr!!!!!!!!!!

Reverse: Part way through this post Dr. Smith called. After discussing my case with his colleagues, he was reminded they were upgrading one of the radio surgery stations and it would no longer have the weight restrictions. I’ll have to wait till mid-December but Gamma Knife is still a possibility. This is truly good news because the success rate with radio surgery is so much higher than standard ration treatment.

Every disappointment is just a moment in time. You stay because you get the counter moment eventually. BUT if my life were a movie, I wouldn’t watch it, I’m just sayin…

Signifor

Signifor is the supposed miracle treatment for pituitary Cushing’s, the only drug officially approved to treat the disease. When my first surgery failed, I was not really wanting to get right into another one, Dr. Ogrin did some research and jumped on this as an option for me. My endo is not a Cushing’s specialist but she is very enthusiastic and willing to put in the work so her excitement was infectious (haha). There were a couple of hurdles to overcome before actually starting treatment. The medication is a twice daily injection. The cost is approximately 12,000 per month. In order to get the insurance company to cover it we had to do many preliminary tests and baselines for future tracking. There were the normal cortisol level tests (blood, urine, and saliva), EEG, and ultrasound of my gallbladder as Signifor often caused gallstones. During the ultrasound, it was found that I already had about a dozen gallstones. The stones were not irritated but since they were only going to get worse it was decided to remove the gallbladder proactively. OK, so about two months later we were ready to go.

I started the injections knowing that the major side effect would be the increase of blood sugar generally causing diabetes so when my blood sugar went up it wasn’t a surprise. As big as I am, I had never actually crossed the line to diabetic before. We started Metformin which made me sick as a dog. I still stayed on it for almost 2 months. It kept my blood sugar in normal range but I basically lived in the bathroom. YUCK! Now we are trying a Glipizide. It has been ok but I take it with food and my spikes are post injection so my sugars never stay level. The other side effects nausea and hair loss, I can live with I guess. Not a fan of seeing my own scalp but due to overheating I can’t do hats.

Also, the insurance will only pay for the drug 3 months at a time and then require proof it is working before they will agree to the next 3. I was really nervous because I really didn’t know if it was working. Some of my initial symptoms were easing up but nothing was cured and I was still gaining weight. Time for test again. Blood, urine, and saliva all told the same tale. My cortisol was lower than initial levels. It had been cut in half but was still well above “normal” range. I just got word that it was enough for insurance to approve to continue treatment. Woo HOO!

This is not a long term solution. It’s a treatment not a cure. It only works as long as I am able to get the injections and the side effects are hard on the body. About 20 minutes after every shot I get waves of nausea. No way around that one. I am now diabetic which may or may not go away. The expense is also not realistic long term. I currently have Medicaid but if I ever had to pay $12,000 a month myself it just wouldn’t happen. I am only 36 so we are talking just under $150,000 every year for a long time still and that is just the injections. My other maintenance meds (blood pressure, depression, anxiety) are a whole separate thing. When my cortisol does get to normal we may be able to ween off some of them, thank god.

So, for long term I still have to do either the trans-nasal or radio surgery to get rid of the hormone producing tumor. I’m pretty set on radio surgery. I spoke to Dr. Smith’s office today and they say the 14th or 21st. I’ll hear soon for a set date.

So, with all of the above you may be asking why bother with Signifor at all. I must admit I ask myself the same thing sometimes but then I consider what has improved since starting.

• My mental clarity has improved. I was getting increasingly foggy.

• I am on NO pain meds. The muscle pain just for pain sake is gone.

• I am stronger. I no longer feel as if I cannot get out of bed or off the couch. I may not have lost any weight but I can carry it around now.

• My ‘sweats’ are getting fewer and farther between. Before I would break into a drenching sweat regularly for no reason at all. It’s now down to only about once a day unless I’m at a store or get to cleaning my house and overexert.

• I can sleep through the night.

• I no longer am constantly fatigued.

• I have hope that one day I could be normal again.

These are the things I must remind myself of when I have a rough day. The kind of sick I am now is much better that my previous disheartening misery. 🙂 So I’ll continue until a cure or insurance stops paying.

Feb 2016 I had the gamma knife radiation…bunches of fun. No changes…

…except it is now January 2017. My symptoms are returning, levels back up, whatever Signifor was doing, it doesn’t seem to be any longer.

My doctor who was so excited for challenge in the beginning is starting to throw around gastric bypass, Korlym, and BLA, There is no end to the bullshit.

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Gail (RAMBOETTE), Adrenal Bio

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golden-oldie

 

Originally posted Sunday, June 14, 2009

If anyone has knowledge of how long it takes to feel better after BLA, please advise. I’ve had unusually difficult setbacks since surgery. This web site has helped a lot so far..

I have had high blood pressure that has become harder to control for 11 years. Ultra sound did not show anything. Many other symptoms increased over the years, including diabetes, body shape, hump etc.

In feb. Of ’09 a ct showed a tumor in both adrenals. I was able to get into the mayo clinic and was diagnosed with cushings and had surgery on 4/10/09.

One week later, my bp dropped, to 30 on the diastolic . My face hit the floor when I fainted. I had to be air lifted out. I received a concussion and broken nose. On 6/12/09 I had my nose operated on and a cyst taken out of my lip.

I’m on my maintenance dose of hydro (20/10). How long before I feel better? Diabetes improving. Blood pressure still high.

 

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lyebye0, Pituitary Bio

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The pituitary gland

The pituitary gland

 

I am stuck in the same doctor visit, testing, referral, waiting cycle that many of us find ourselves in and in the meanwhile my symptoms continue to worsen. I suddenly have developed high blood pressure and have high serum glucose. My TSH is also recently elevated for the first time ever, despite my Hashimoto’s. An MRI revealed a pituitary tumor.

I did two midnight salivary tests with one coming back high (but only slightly above the utmost limit) and the other fell in the normal range. The doctor believes that this is something to be “watched.” This mentality is so frustrating. I am planning on getting a referral to a local neurosurgeon. I no longer care what doctors’ opinions are. I will find someone who knows more about this than a regular endocrinologist.

These boards and support groups are life saving. When I read over and over again other people’s stories that are the same as mine, I feel affirmed. And affirmation is hard to come by with this disease.

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MaryO – 10 Years Cancer-Free!

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WOOHOO

Amazing! It’s Been 10 Years, Already.

Today is the Tenth Anniversary of my kidney cancer surgery.  These ten years have been bonus years for me.  For my cancer stage, the 5-year survival rate was 81% and I’ve made it twice that long – so far.
What were the odds I’d get kidney cancer? According to my “risk factors”, I “should” have had colon cancer because both parents and an aunt had it twice each.  Of course, there’s no guarantee that I won’t get that, too.

And the risk factors for kidney cancer aka renal cell carcinoma? The majority of kidney cancers are renal cell carcinomas. Risk factors for renal cell carcinoma include:

  • Age. Your risk of renal cell carcinoma increases as you age. Renal cell carcinoma occurs most commonly in people 60 and older.

I was younger than this.

  • Sex. Men are more likely to develop renal cell carcinoma than women are.

I am female

  • Smoking. Smokers have a greater risk of renal cell carcinoma than nonsmokers do. The risk increases the longer you smoke and decreases after you quit.

Not me!

  • Obesity. People who are obese have a higher risk of renal cell carcinoma than do people who are considered average weight.

A Cushing’s gift

  • High blood pressure (hypertension). High blood pressure increases your risk of renal cell carcinoma, but it isn’t clear why. Some research in animals has linked high blood pressure medications to an increased risk of kidney cancer, but studies in people have had conflicting results.

Never had this until the kidney cancer.  It went away immediately post-op but it’s back now.work

  • Chemicals in your workplace. Workers who are exposed to certain chemicals on the job may have a higher risk of renal cell carcinoma. People who work with chemicals such as asbestos, cadmium and trichloroethylene may have an increased risk of kidney cancer.

What?  Me work?  

  • Treatment for kidney failure. People who receive long-term dialysis to treat chronic kidney failure have a greater risk of developing kidney cancer. People who have a kidney transplant and receive immunosuppressant drugs also are more likely to develop kidney cancer.

Nope.  Some sites also list polycystic  kidney disease.  I don’t have that but half my husband’s family does.  Hmmm – wonder if that’s contagious

  • Von Hippel-Lindau disease. People with this inherited disorder are likely to develop several kinds of tumors, including, in some cases, renal cell carcinoma.

I’ve wondered about this but, you know, it’s too “rare”.

  • Hereditary papillary renal cell carcinoma. Having this inherited condition makes it more likely you’ll develop one or more renal cell carcinomas.

Not that I know of. 

I am so thankful for all my doctors but today I am thankful for Dr. Amir Al-Juburi who saved my life by removing my kidney cancer (renal cell carcinoma).
April 28 2006 I picked up my husband for a biopsy and took him to an outpatient surgical center. While I was there waiting for the biopsy to be completed, I started noticing blood in my urine and major abdominal cramps. I left messages for several of my doctors on what I should do. I finally decided to see my PCP after I got my husband home.
When Tom was done with his testing, his doctor took one look at me and asked if I wanted an ambulance. I said no, that I thought I could make it to the emergency room ok – Tom couldn’t drive because of the anesthesia they had given him. I barely made it to the ER and left the car with Tom to park. Tom’s doctor followed us to the ER and became my new doctor.
When I was diagnosed in the ER with kidney cancer, Tom’s doctor said that he could do the surgery but that he would recommend someone even more experienced, Dr. Amir Al-Juburi.
Dr. Amir Al-Juburi has been so kind to me, almost like a kindly grandfather might be, and he got rid of all 10 pounds of my kidney and cancer.
I owe him, the original doctor, and my Cushing’s doctors, my life.
The following are extracted from posts that were made during my kidney cancer diagnosis and surgery in 2006:
From Alice April 29, 2006
This is Mary’s friend, Alice (Dearest of Power Surge).
I’m not going to go into every detail at this time. I will fill you in on more details as I receive them from Mary and Tom. I’m sure Mary posted on the boards that she recently went back to Johns Hopkins in Baltimore to be retested because the tests that had been done the past year were incorrect and she was getting the wrong dose of hGh for the past year. In any event, she was tested again on Thursday and then returned home. The above is just a preface to create a time frame of events. It isn’t the reason I’ve come here to ask for prayers for Mary.
This is: Mary mentioned to me last week that she had noticed some blood in her urine. She was going to get it checked. As it were, when she returned from Johns Hopkins, she drove her husband, Tom, to get his regular biopsy for his history of prostate cancer.
While in the emergency room, Mary started having cramps in her stomach and when she went to the rest room, discovered a great deal more blood in her urine. Fortunately, she was at the hospital with her husband when this occurred. The cramps were becoming more severe. The doctors checked her out and they found a tumor in one of her kidneys – the tumor is actually the size of the kidney.
At this point and time, the doctors are recommending removal of the kidney and one of her adrenal glands. One surgeon recommended immediate removal of the kidney. Mary and Tom wanted to first talk with her other doctors and will decide on what surgeon performs the surgery. She never left the hospital where she simply went to take Tom for his test. Instead, she was admitted. She had a great deal of pain last night, but it was helped with pain killers. I will provide hospital details later.
She’s scheduled for an MRI later this morning or early afternoon.
I don’t want to go into much more detail except to say that whatever the condition of the tumor, the prognosis is pretty good.
I know how much all of you love her (as I do), how much she’s done with this site, how hard she’s worked to provide you with so much wonderful information about Cushing’s — plus what a good friend she’s been to so many of you. I also know that those of you who talk to her may want to call her. She needs time to go through all the preliminaries before being inundated with calls.
I will do my best to keep you apprised of Mary’s situation as I receive information. When she gives me the go ahead for giving out the hospital and is ready to take calls, I’ll pass the information along.
Please take a moment to send prayers for {{{{{MaryO}}}}} (she’s “our” MaryO on Power Surge, too) that everything will turn out all right and she will get through this crisis with flying colors.
Dearest
~~~~~~~~~~~~~~~
From Alice April 30, 2006
* Addendum: 9:30 AM – made some corrections to the 5 something AM post.
What a beautiful show of love and support.
I spoke to Mary last night. She had the MRI as scheduled. She spoke with her own doctor and they decided on a surgeon, but it means going to another hospital. She said she’d probably be coming home for a day before going in for the surgery.
I hesitated to mention in my first post that the doctors said they * think the kidney tumor is malignant due to it’s size – 5 cm. I’m sure many of you surmised that, or why would the emergency room doctors recommend immediate surgery. However, as I said earlier, Mary and Tom wanted to consult with her own doctor first. She was told that if, in fact, it is kidney cancer and is detected and treated early and confined to the kidney, the chances for a full recovery are good.
Considering what she’s going through, Mary sounded good. Lord knows, she’s been through so much already. God willing, this may resolve some of the other health issues she’s been experiencing.
Knowing Mary, when she returns home for a day before checking into the other hospital for surgery, if she’s up to it, she’ll post here herself and provide you with additional details.
For now, I’ve told you just about all I know.
Keep up those prayers!
Alice
~~~~~~~~~~~~~~~~~~~~~~~~~~
From Alice April 30, 2006
11 AM Update:
Mary had a brain scan this morning. She was supposed to have a bone scan today as well, but they’re doing it tomorrow instead, so they told her she could GO HOME TODAY (until she checks into the other hospital for the surgery)! She’s thrilled to be going home and I’m sure she’ll be here posting to all of you herself. You know Mary can’t stay away from computers very long. I’d venture a guess that if they looked inside, her arteries and veins would look more like computer cables (ducking).
We love Mary – so keep on praying that everything goes well, that the tests all yield good results and that she’ll be getting better ‘n better until she’s finished with this whole ordeal
(please, God!)
Reminds me of the phrase . . .
Good, better, best
Never let it rest
Til the good is better
And the better, BEST!
Alice
~~~~~~~~~~~~~~~~~~~~~~~~~~
From Alice April 30, 2006
Update – 2:15 PM:
Spoke with Mary. She’s home. She’s resting. The brain scan, chest/lung x-ray, abdominal scan all came out clean. The only test remaining that I know of is the bone scan, but it’s excellent that the above tests yielded good results.
She’s going back to the hospital for the bone scan tomorrow and, hopefully, scheduled for surgery ASAP.
Her attitude is very good. She sounds very good and I know, with God watching over her, and everyone showing so much love and caring, she’ll pull through this with flying colors.
It’s easier for me in conveying information to you to do so with an upbeat attitude. I try to avoid thinking of these things as tragedies or things that make me sick. Of course, I’m saddened and sorry that Mary is going through this — and has gone through so much, but such is life. You all certainly know that very well. Nobody hands us a guarantee that life is going to be without problems. And, yes, as the Morton’s salt container says, It never rains, it pours. But my M.O. is to try to keep as positive as possible, especially when in the throes of life’s unanticipated crises.
I believe the expression, “Attitude” is half the battle won.
Mary’s attitude is excellent and I know in my heart she’s going to come through this just fine.
Alice
P.S. An expression I remember my mother using, “The things we fear never happen. It’s the things we never think about that do!”
~~~~~~~~~~~~~~~~~~~~~~~~~~
From Alice May 2, 2006
There wasn’t much to add yesterday. Mary was scheduled for a bone scan, but first had to have the radioactive tracer substance injection (I presume it was injected — she wasn’t sure herself). She was scheduled to have that around 10:30-11 AM, ET, and then had to return five hours later for the bone scan.
I didn’t speak with her last night, but she text messaged me around 6:30 that she was finally home and that the surgery had been scheduled for a week from today, Tuesday, May 9th at 9:30 AM.
I’ll post the hospital information as the time draws near.
That’s about it for now. She’s still sounding pretty good and wants to get the surgery done already!
Let’s keep those prayers going!
Alice
~~~~~~~~~~~~~~~~~~~~~~
From Me May 2, 2006
First off, I’d like to thank you all for your good wishes, support and prayers. I could do the Sally Field thing and say “…and I can’t deny the fact that you like me, right now, you like me!” but I won’t 🙂
I plan to print everything out and take it with me to the hospital as a cheery-upper.
Alice has been such a wonderful friend through all this, calling, checking up on me, keeping all of you updated on things as they are known right now. Her support and love has been such a wonderful blessing in my life, especially now.
As it is, I’m currently feeling “normal” whatever that is. If I didn’t know I had a problem, I would think that I was just fine.
I am fortunate that I found this out before the tumor could grow any larger. I am fortunate that I was close to the ER, not driving home from Baltimore, or in Baltimore, Oklahoma or on the cruise.
I know that the tumor has been growing for quite a while – it’s very large. I saw the MRI images and even I can tell that it’s not normal. As far as I know now, all the other scans have been fine. I had an abdomen CT, chest CT, brain MRI, chest/abdomen MRI and a full body bone scan.
When I was in the ER Friday, they assumed that it was a kidney stone and did the first abdomenal CT scan looking to see where that was. They came back with the news that yes, I had a kidney stone but that it was the least of my worries at them moment. So, I was admitted to the hospital and had all the other scans except the bone scan. Knowing what I know now, it would have been better and easier for me to have had the bone scan as an inpatient. As soon as I checked out and was out of the system, it was harder to get an “emergency” (not scheduled weeks in advance) bone scan. Oh, well.
My surgery will be next Tuesday, May 9, at 9:30AM at Fairfax Hospital (http://www.inova.org/inovapublic.srt/ifh/index.jsp ). I’m expected to stay there for 3-5 days post op and they don’t anticipate any pesky complications like chemo or radiation at this time.
For now, I’m keeping my normal schedule, avoiding reading horror stories online, eating, sleeping – even napping! – as usual. Sometimes I even forget that I have this little medical appointment next week.
For a non-phone person I’ve talked with so many people these last few days, it’s mind-boggling.
I’m happy to report that all is not lost on the (Cushie) cruise. Someone will replace me – and there will be another cruise later in the year. YEA! My main “concern” on that now is that I’ll lose weight (finally!) post-op and my cruisewear will no longer fit. Yeah, right.
In thinking back, I think it’s a good thing that my arginine test was messed up in Sept of 05. If it hadn’t been, I wouldn’t have redone it on Thursday. I believe that having that stuff in my body was what made my kidneys rebel and act up on Friday. So, without the lab screw-up I might not have known anything for a long time.
So, it’s all good
Thanks to everyone who has called and posted such wonderful things. I cannot begin to imagine what my email looks like…
~~~~~~~~~~~~~~~~~~~~
From Alice May 9, 2006, 09:10 AM
I’ve been in constant contact with Mary. Spoke to her at 7 this morning. She, Tom and their son, Michael, were on the way to the hospital. Mary sounded very good as she has all week. She’s going in with an excellent attitude.
She’s probably being prepped right now. The surgery is set for for 9:30 (ET). They anticipate the surgery will last 3 1/2 – 4 hours.
Now, all we can do is pray and wait. Tom will call me after the surgery is over. As soon as I hear something, I’ll make it a point to come back and post what I know.
Your support, love and prayers have been remarkable. Thank you on behalf of Mary. Please keep on praying until it’s over.
God? You listening? You’ve got someone very special to watch over this morning. We’re counting on you!
Alice
~~~~~~~~~~~~~~~~~~~
From Alice May 9, 2006, 12:33 PM
Mary’s husband, Tom, called me at 12:15
He said it’s going to be another 3 hours – around 3:15 PM – before they’re done. Surgery didn’t start as scheduled at 9:30, but more like 11:30. There wasn’t that much he could tell me except that the doctors said, so far everything is going as expected and Tom said, “so far, so good.”
I hesitate to draw any conclusions from that statement because I’m not 100% sure of what the doctors expected, so it’s a matter of waiting until it’s over.
I’ll keep you posted. Keep praying, please!
Alice
~~~~~~~~~~~~~~~~~~
From Alice May 9, 2006, 2:00PM
Tom called at 1:15, but we had a bad connection. We finally connected.
The operation is over. Mary was being sewn up. Tom said according to the doctor, “the tumor and the kidney were removed.” The doctor is calling the operation a “complete success.”
I asked if they saw any signs of cancer anywhere else because Mary had told me originally that they’d said they might remove the gallbladder, too, but they didn’t remove the gallbladder – which is a good sign.
It appears as though everything was concentrated in the kidney.
Thank God. It’s over!
Alice
~~~~~~~~~~~~~~~~~~~~~~~~
From Alice May 9 2006, 07:39 PM
Someone said: “… I told her that I would wait until she was home and feeling much better before I talked to her again and she agreed that she wasn’t sure she would be up to taking phone calls. Again, thank you so much for keeping us updated… this way we can know how Mary is doing without her having to take so many calls…”
That’s exactly how Tom and I feel. Tom suggests people not call the hospital. I wouldn’t even call his cell phone all day. I waited for him to contact me. I know he’s also exhausted. I figured he’d call when he was up to it. He called about 15 minutes ago.
It’s important that Mary get all the rest she can while recovering. Yes, everything turned out well, but she still had major surgery, is on morphine and needs her sleep. It’s important that we all allow her this time to rest.
It just so happened she was awake when he called and he turned on his cell phone’s speakerphone so Mary and I could talk for a minute. I was so happy to hear her voice. She sounded tired, her mouth was dry, but she sounded good.
Because this is a public message board, I prefer not to post details of the room she’s in. If anyone wants this information for the purpose of sending something to Mary, please E.mail me from the address you registered with on the board, and please include your user name. Thanks.
Another thing is that Mary has allergies, so for those wishing to send something to her, Tom and I (and Mary, as we discussed before she went into the hospital) agree she’s better off without flowers.
Finally, Tom said the doctor was very pleased with how her surgery went – that her body was quite robust, that there was very little bleeding, so no transfusion was needed, and he was generally very pleased with the surgery.
It’s been a very stressful day. I love Mary like a sister. We’ve been good friends for 11 years. I cried so after he initially called and said everything went well. I know all of you love and care about Mary, too.
All I’ve thought all day is, thank you, God, for watching over MaryO. I know all of you have thought the same thing.
That’s about it for now — she even cracked a personal joke when we said goodbye — she’ll be back to her old self again before too long.
Alice
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
From Alice May 13 2006, 08:10 PM
Saturday Update on Mary:
When she’s back on her computer, I know Mary will be thrilled to read all your thoughtful, beautiful and caring messages.
She’s doing well. The worst part is the incision which is quite large because the doctors originally anticipated the possibility of having to remove the adrenal gland above the kidney that was removed and the gall bladder as well. However, as I posted earlier, once they got in there, everything was found to be clean so they just took out the tumor and the kidney (as if that’s not enough). So, when she gets up to go to the bathroom, the incision is quite painful. I imagine an incision of that size will take a while to heal. Other than that she says she feels good!!
Additionally, the doctor was awaiting the results of the lymph node biopsy (just to be sure) and he told her yesterday, “everything looks clean.”
She was originally scheduled to go home tomorrow, Sunday, but . . . she went home TODAY!
Spoke to her after she arrived home (sorry I didn’t post earlier, but also have my Web site to deal with).
She sounded great and was glad to be home especially since a new person checked into her room yesterday and Mary wasn’t able to sleep all night.
That’s all for now – and all very good news, thank God!
Alice
~~~~~~~~~~~~~~~~~~~~~~~~~
From Me: June 17, 2006 post-op:
Thank you all for your prayers, good wishes, cards, phone calls, gifts, general “cheery-uppers”. They all really helped me on my road to recovery.
I do have a ton of thank you cards to send out to lots of people – I’m very slow at that. Under normal circumstances my handwriting is terrible. Now, post-op kidney cancer, I can no longer take my arthritis meds or any NSAIDs and my writing will probably be even worse 😦
I am very nearly better, not much pain anymore, a nasty big scar and my energy levels aren’t so great. Of course, they were awful before. I can no longer take the GH even though I’m deficient. In 5 years (if I survive!) I can take the GH again, supposedly.
I’ve had a lot of time to do a lot of thinking over the last 6 weeks. I know I was extraordinarily lucky to have my tumor discovered before it was too late. The lab reports and my surgeon reported that it would only have been a week or so before the tumor had hemorrhaged and caused major problems. Thank goodness the argenine retest for GH had caused me to bleed – at least I think that’s what set it off. If I hadn’t had all the blood and pain for one day only, I’d have had no clue that I had this cancer and who knows what would have happened in that next week.
I will be getting CT scans every 3 months for awhile to be sure that there is no cancer hiding out.
During my time of thinking, I have also been thinking about making changes to the boards based on what I have heard was going on here. I am not yet sure how these changes will manifest themselves but I do know that bashing others will not be tolerated. More on this later, in another area.
Again, thank you for all your support!
~~~~~~~~~~~~~~~~~~~
From Me July 6, 2006
Since I recently had surgery for kidney cancer, I’ve been looking around for another board to read and talk about this with other survivors (hopefully!) I haven’t found anyplace I’d like to visit or feel comfortable with yet, so I decided to make a new area here.
I know – or I think I know – that no one else here has had kidney cancer, although I know at least 1 other person has had a kidney removed and several others have reported kidney stones and other possible kidney diseases.
I’m sure that my recovery will be much the same as for any other major abdominal surgery, although I’d like it to be faster.
Before my surgery, I didn’t have time really to consider that I had cancer, and what it meant for my life. There was no going from doctor to doctor, running a different test each week, suspecting that maybe… Just boom, there it is. Cancer.
Now that I’m about 8 weeks post-op, I’m thinking more and more about this and how it might affect my future. I know that there are going to be lots of scans, every 3 months, just to be sure that there wasn’t a cell hiding out.
I know I have to be careful with meds – no NSAIDs so my arthritis is worse. No GH – it’s contraindicated for 5 years…assuming I’m cancer free then.
I’m supposed to be eating less protein, more fruits/veggies, drinking more water.
And I’m supposed to avoid playing football and other things that might damage my remaining kidney.
Normally, I know how very lucky I am. I just reread the path reports and know that the tumor was already hemorrhaging around the borders and the cysts contained hemorrhagic fluid. Things could be much worse.
Sometimes, at night when I can’t sleep, I wonder why I was lucky like this. What haven’t I done with my life that I should. Seems to me that I’ve accomplished what I should already.
And, in the night, I worry about the cancer returning, taking my other kidney or worse.
At this time, there’s no standard chemo unless it’s metastasized, although there are some promising clinical trials and radiation doesn’t seem to work for this kind of cancer, so if it returns it’s more surgery.
I suppose I could/should have put all this in my blog, but I put it out here in case anyone else should need this in the future. I hope not!
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
From me Aug 19 2006, 01:25 AM
Thanks so much for asking!
Unfortunately, I haven’t read the boards much lately – I’m spending most of my online time deleting/banning the InstaChat intruders.
I have been working on the websites, though, and that’s always fun! I’ve even added a new one to the roster and it has some cool stuff on it. New features to be announced in the upcoming newsletter.
I’ve been even more tired than usual now that I’m off GH. I can’t take my arthritis meds, or anything like Excedrin (no NSAIDs) so my joints are nearly always bothering me and I have to wait out any headaches. I’m also just getting over a UTI.
I just had my 3 month post-op CT scans and I hope they come out ok. At first I was grateful that I wouldn’t have to have chemo or radiation come to find out that neither has been discovered yet which works well with kidney cancer. Apparently, it can resurface any time for the rest of my life. I’m hoping that some of the chemo clinical trials show some good results so I can get this thing before it metastasizes somewhere.
I’m having trouble sleeping (1:20 AM here, now) although I’m always tired. My mind plays all kinds of tricks in the night. Those InstaChat people don’t help, either! When I wake up just a little, instead of falling back asleep, I’ll go check to see what they’ve done.
Whine, whine!
On the plus side – I survived the kidney cancer surgery, and it’s almost vacation time!
Even vacation will be bittersweet, though. 2 years ago, Sue went with us on vacation. She had a great time and she had asked if she could go with us again this year. Of course, we had said yes…
~~~~~~~~~~~~~~~~~~~~~~~
From me May 8 2008, 11:07 PM
I am feeling very maudlin, a bit down and depressed. It’s very nearly the anniversary of my kidney cancer surgery. I posted this in my blog a few days ago:

I’ve been feeling weird for about a week now. Last Friday, I went through the whole “Sending Prayers” topic (MKO’Note: this thread) that my good friend Alice started for me.After I read that, I started reliving all the kidney cancer events…again. I know I shouldn’t do this. My counselor says that this is a very stressful thing to do and it’s not good for me, for anyone. But I do it anyway, especially the pituitary and cancer surgery anniversaries. I wish I did this with good stuff, could relive that instead of the scary and painful.
After I finished rereading all that, I went back to my post in the cancer section: I guess I’ve talked about this more than I think! I just wish there was someone I could get answers and support from. I have never met anyone in real life who has shared my particular brand of cancer, haven’t talked to anyone on the phone or emailed anyone.
I even asked at my local cancer support center about support for me – they have all kinds of meetings, mainly for breast and prostate cancer, but other kinds, too. But they said that there weren’t enough kidney cancer people to have a meeting. The one and only book that the library there has on kidney cancer was given to me by the author to donate there.
Lucky me – two rare diseases that no one gets. According to statistics I should be a black man who smokes and works in the iron and steel industry or is exposed to certain chemical and substances, such as asbestos (a mineral fiber that can be used in construction materials for insulation and as fire-retardant) and cadmium (a rare, soft, bluish-white chemical element used in batteries and plastic industry), also increase the risk for renal cell carcinoma. I should have polycystic kidneys and not drink the copious coffee.
So…where did it come from? A mutation of my parents’ and aunt’s colon cancer or do I still have that looming on my horizon?
And the Cushing’s came from nowhere, too. I know that no one knows these answers but I think of them a lot, especially at night.
Although I’m not afraid of death and would like it to be as peaceful and pain-free as possible, I still dream at night that I’m dying or have died. These dreams have been going on since before the cancer and I can’t seem to shake them although I’m taking them more in stride now and can go right back to sleep.
And from last year’s post on this topic, these still concern me:
What if the lung nodules that “aren’t growing” turn out to be something on the next scan? Is the stomach distress I’m currently feeling a cause to ask for my next colonoscopy a bit earlier?
Is the pain on the other side the other kidney causing trouble? Or something new with an ovary?
What if, what if…?
Seems like in my addled brain any new symptom could be cancer, not the simple stomach bug or pulled muscle.
Had they told me in 2006 that I only had a year or two to live, I’d have thought it far too short a time. I guess how long a year is depends on the frame of mind!
I hate going for scans because they could show something but I get nervous when there are no scans because there could be something else! Seems like my mind is setting me up for a lose-lose situation.
I’m sure as I get closer to Friday that other thoughts will come to me. I am so grateful that I’ve had these two “bonus years”. I feel like there is so much still to do with the Cushing’s sites and I will never get them done in my lifetime but I plan to keep trucking along!

And from Wonderful Words of Life…
I’m acquiring the title of an old hymn for this next post.
After I was finished with the long Cushing’s diagnostic process, surgery and several post-op visits to NIH, I was asked to give the scripture reading at my church. The man who did the sermon that week was the survivor of a horrific accident where he and his family were hit by a van while waiting at an airport.
i thought I had written down the verse carefully. I practiced and practiced, I don’t like speaking in front of a crowd but I said I would. When I got to church, the verse was different. Maybe I wrote it down wrong, maybe someone changed it. Whatever.
This verse has come to have so much meaning in my life. When I saw at a book called A Musician’s Book of Psalms each day had a different psalm. On my birthday, there was “my” psalm so I had to buy this book!
Psalm 116 (New International Version)
1 I love the LORD, for he heard my voice;
he heard my cry for mercy.
2 Because he turned his ear to me,
I will call on him as long as I live.
3 The cords of death entangled me,
the anguish of the grave came upon me;
I was overcome by trouble and sorrow.
4 Then I called on the name of the LORD:
“O LORD, save me!”
5 The LORD is gracious and righteous;
our God is full of compassion.
6 The LORD protects the simplehearted;
when I was in great need, he saved me.
7 Be at rest once more, O my soul,
for the LORD has been good to you.
8 For you, O LORD, have delivered my soul from death,
my eyes from tears,
my feet from stumbling,
9 that I may walk before the LORD
in the land of the living.
10 I believed; therefore I said,
“I am greatly afflicted.”
11 And in my dismay I said,
“All men are liars.”
12 How can I repay the LORD
for all his goodness to me?
13 I will lift up the cup of salvation
and call on the name of the LORD.
14 I will fulfill my vows to the LORD
in the presence of all his people.
15 Precious in the sight of the LORD
is the death of his saints.
16 O LORD, truly I am your servant;
I am your servant, the son of your maidservant;
you have freed me from my chains.
17 I will sacrifice a thank offering to you
and call on the name of the LORD.
18 I will fulfill my vows to the LORD
in the presence of all his people,
19 in the courts of the house of the LORD—
in your midst, O Jerusalem.
Praise the LORD.

I carry a print out of this everywhere I go because I find it very soothing. “when I was in great need, he saved me.” This print out is in a plastic page saver. On the other side there is an article I found after my kidney cancer. I first read this in Chicken Soup for the Surviving Soul and is posted several places online.
The Best Day Of My Life
by Gregory M Lousignont
Today, when I awoke, I suddenly realized that this is the best day of my life, ever! There were times when I wondered if I would make it to today; but I did! And because I did I’m going to celebrate!
Today, I’m going to celebrate what an unbelievable life I have had so far: the accomplishments, the many blessings, and, yes, even the hardships because they have served to make me stronger.
I will go through this day with my head held high, and a happy heart. I will marvel at God’s seemingly simple gifts: the morning dew, the sun, the clouds, the trees, the flowers, the birds. Today, none of these miraculous creations will escape my notice.
Today, I will share my excitement for life with other people. I’ll make someone smile. I’ll go out of my way to perform an unexpected act of kindness for someone I don’t even know.
Today, I’ll give a sincere compliment to someone who seems down. I’ll tell a child how special he is, and I’ll tell someone I love just how deeply I care for her and how much she means to me.
Today is the day I quit worrying about what I don’t have and start being grateful for all the wonderful things God has already given me.
I’ll remember that to worry is just a waste of time because my faith in God and his Divine Plan ensures everything will be just fine.
And tonight, before I go to bed, I’ll go outside and raise my eyes to the heavens. I will stand in awe at the beauty of the stars and the moon, and I will praise God for these magnificent treasures.
As the day ends and I lay my head down on my pillow, I will thank the Almighty for the best day of my life. And I will sleep the sleep of a contented child, excited with expectation because know tomorrow is going to be the best day of my life, ever!

When I’m feeling down, depressed or low, reading my 2 special pages can help me more than anything else.

In Memory: Gregory J. Bart Jr. May 7, 2016

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in-memory

Greg died of a presumed heart attack at the age of 55.

September 19, 2015 he said “I was diagnosed hypertensive way back when I was 20. The condition remained for years, and became more acute with my cushings pit tumor. I still have high blood pressure, partially teated with three meds. I’ll have to consult my doc and see if this (Primary aldosteronism) may also be an issue.”


He wrote this about a year ago: On your daughter’s wedding day, you wouldn’t go down to the swap meet to pick out some second hand, ill-fitting dress, would you?

You would not.

If you were a baseball team manager getting ready for the World Series, you would not make a call down to your minor league affiliate and ask them to send up their 3rd best pitcher for the 7th game, would you?

You would not.

If you were being audited by the IRS, you would not go to the local high school and ask for assistance from the remedial accounting class, would you?

You would not.

And so, why would you not insist on, in fact demand, the very finest MRI equipment for your pit scan? A false negative is an invitation for massive bills down the road (for the blue pencil people in your insurance carrier’s claims dept.) and years of misery for you, the patient.

And you would not settle for a myopic tailor for that dress, would you?

You would not.

So, make sure your pit scan is done under the proper protocol, and looked at by an experienced hand. Without that, your time in the machine may be wasted.

You deserve the best. This disease will try to do it’s worst. Don’t let it, and don’t let your case be the one that falls in the cracks in the machine, or the system.


More information when it becomes available.

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Deborah S, Undiagnosed Bio

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undiagnosed

 

Hello all,

I do not know where to begin. For many years I have been struggling with these symptoms. I have proximal weakness, intolerance to stress, blood pressure fluctuations, hyperpigmentation, reactive hypoglycemia, sweating, severe dehydration, very bad confusion, vision, memory problems, physical body changes (hump, bruises), carb intolerance, and inability to exercise.

My endocrinologist did a workup for Cushing’s disease and the midnight saliva test was high. She brushed it off as “stress”. I am seeing a doctor now that says I have POTS and Dysautonomia. My doctor says I have inappropriate adrenaline rushes.

My body is falling apart because I haven’t found a doctor who will take my symptoms and test results serious. I would like to talk to others who are having trouble getting diagnosed and also to those who have gotten diagnosed who have a good doctor.

God Bless and Thank You,
Deborah

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