Participating in Life

I think that this is so important, especially with our health.  Had I not been an active participant and followed several doctors’ advice 25 years ago, I’d most likely not been here to write this.

I see this all the time, though.  Whatever the doctor says is true.  People will say that the doctor gave me this or that med but they don’t know what it is for.

I just don’t get how people can take meds and not have a clue what they are, how they work, how they might interact with other drugs they may be taking.  But it happens because people blindly follow whatever a doctor may give them.

Participation is so important – you have to know how YOU’RE feeling, what YOUR symptom are.  Do your own research.  Your doctor doesn’t know what it feels like to live in your body no matter how much you try to tell him/her.

Ultimately, you are the one who cares most about yourself and the only one who can make a difference through your research, thoughts and actions.

Just because a doctor gives you something, you don’t have to take it.  24 years ago a locally well-known neurologist “gave me” Xanax. Since he couldn't see my tumor with his Magnetic Resonance Imaging (MRI) machine there was "no possibility" that it existed.  Had I followed his advice, taken the Xanax and stopped pursuing a Cushing’s diagnosis I would most have likely died by now.

The doctor was going by the odds.  The odds were that I really didn’t have a pituitary tumor.  But I’m not a statistic and neither are you.  Follow your instincts and take care of YOU.  This is the only life you’ll ever have.

The most healing thing we can do for ourselves is to participate in the process of our lives as fully as we can-even when the unexpected and the fearful happen.

~Today’s Page-a-Day calendar

Now I know what it feels like to have a gun held to my own head: Ameera MacIntyre's battle with a brain tumour

Some husbands come home moaning that the boss doesn't appreciate them or that the train to work was delayed again. My husband Donal returns complaining about a crack dealer who pinned him to the floor, drilled a pistol into his temple and threatened to blow his brains out.

And now I know what it feels like to have a gun held to my own head.

I'm only 34, I work out, I don't smoke and I drink only socially. I normally enjoy excellent health. But suddenly, three years ago, I found myself waking up every day with what felt like a bad hangover.

Rolling with the punches: Ameera with husband Donal MacIntyre

As each day progressed, the feeling of grogginess and a dull headache would coalesce into a mind-splitting migraine. Sometimes I would be violently sick.

Perhaps most frightening was the effect on my vision. I felt as if there were daggers behind my eyes. My eyesight seemed to be deteriorating rapidly and I was struggling to focus. By the end of each day I was exhausted.

Donal was working flat-out on various TV programmes at the time and I was struggling to look after our three-year-old daughter, Allegra, on my own. I went to see my GP. 'Most likely a hormone imbalance,' he announced airily, after examining me.

'Your periods are irregular and I would suggest that stress is the most likely explanation.' He sent me for blood tests, to reassure me, and he said that if the headaches got any worse I should try paracetamol.

Oh, and he suggested that I take some exercise. Well, we could all do with more of that but in my bones I knew that that wasn't the cause of the problem. Nor, I suspected, was stress.

Sharing my life with someone whose job involves mixing with violent criminals meant I did know a little something about stress. After all, Donal has moved house 50 times in the past decade to avoid the attentions of the criminals he specialises in exposing.

We have moved seven times since we married just three years ago.

I had also put on about 12lb. For someone whose weight had never changed in ten years, metamorphosing from a size six to a size ten in such a short period of time was profoundly worrying.

Living with danger: Ameera and Donal have made efforts to spend more time together, along with daughters Tiger and Allegra, since her diagnosis

Then, even though it was nearly three-and-a-half years since I had given birth to Allegra, I started to lactate. My breasts just started leaking. It was difficult to go out without a change of bra or top because I could never tell when or where my breasts would discharge milk. It was uncomfortable and embarrassing.

My sister, Fareeda, is a consultant oncologist in Newcastle. Her first thought, when I described my symptoms, was that it could be a pituitary tumour.

Is there anyone who doesn't find the word 'tumour' terrifying? I knew that a tumour on the brain could be fatal. I was frightened for myself and for my family.

I contacted a consultant neurologist who set up an MRI scan without hesitation. Magnetic resonance imaging (MRI) works by taking a series of magnetic images of the brain and building them up into a 3-D picture.

Submitting to the scan is not a particularly enjoyable process for anyone, but is especially unpleasant for those who suffer from claustrophobia, as I do. It felt like being enclosed in a sterile white coffin. It took three attempts before I was able to stay in the machine for the required 20 minutes.

The radiologist entrusted me with the scan films and his report, in a large sealed envelope addressed to the neurologist. I opened it in the hospital waiting room, which I knew I wasn't supposed to do.

I felt the blood draining from my face as I read the words 'pituitary adenoma'. Despite the advance warning from my sister, I was still unprepared. It was one of those moments when a strange stillness descends. I knew nothing would ever be the same again.

I didn't tell Donal immediately because I didn't want to add to his stress levels. But once he knew his reaction was to scan the internet for any information on the condition. I had done the same, but the more I found out, the more the knowledge weighed me down. It didn't help that my father had died recently, leaving me feeling more vulnerable than ever.

Three days after the MRI, the neurologist slotted the scans on to the light box and explained what they showed. Our family's future, it seemed, now depended on a tiny nodule - an 'abnormality' - on my pituitary gland.

The bad news was that, yes, I had a tumour, but the good news was that it was small, treatable and manageable. The prognosis was very positive, although the threat will never go away. The neurologist compared it to having a loaded gun pointed at my head. That gun will always be present but drugs can hold the trigger in check.

Despite the neurologist's sugaring of the pill, I was literally shaking as Donal and I sat in his office. I was petrified. A tumour alert is less a diagnosis than an event - it is the end of one way of living and the beginning of a new lifestyle.

The first thing I did was return to my GP, who prescribed a short course of antidepressants to help me get through the day without being dragged down.

While I was dealing with my health issues, Donal was working for channel Five on a number of projects that required him, as ever, to spend a lot of time away from home. I wanted him around and he wanted to give up work and stay at home but, on the other hand, he had to earn a living and life has to go on.

'Don't imagine this means you can pack in the job and laze around the house watching sport,' I told him. We both knew I was trying to make light of something we were going to have to live with for a long time.

But I wasn't in despair. Donal's great friend and canoeing partner, Alexis Gohar, had lived with a pituitary gland tumour for a decade. His condition was chronic and much more severe than mine but his experience and encouragement gave us a great deal of hope.

Alexis had been a guinea pig for radical treatment at the Endocrine Unit at St George's Hospital in Tooting and although he lost sight in one eye, he remained an excellent canoeist, competing for many years after his diagnosis.

I was sent to see an endocrine specialistat Kingston Hospital in Surrey, just down the road from where Alexis lived.

The specialist told me more about the pituitary gland, a small ovalshaped gland found at the base of the brain, below the optic nerve. It helps control the other glands in the body and releases key hormones that affect growth and other body functions.

Pituitary gland tumours are mostly benign but they can grow and exert damaging pressure on the brain and the optic nerves. That was what had been affecting my vision, and causing the agonising headaches.

The tumour was also interfering with the regulating hormones that the gland produces, which was what was causing me to lactate.

I was prescribed a drug called bromocriptine to stabilise my tumour and to inhibit the production of excess hormones.

Researching this medication on the internet, Donal was fascinated to discover-that some men had used it for what one website delicately termed 'sexual enhancement'.

'Your wife's got a brain tumour and you've got one thing on your mind,' I scolded him.
Bromocriptine was a lifesaver. Within months, my symptoms were reduced. Soon the good days out-numbered the bad.

The deterioration of my eyesight was halted and after eight weeks my vision was back to normal. I returned to being a size six. Furthermore, because the treatment worked I escaped having to undergo radio or chemotherapy.

Finally one evening, I realised I had gone the whole day without a headache. I broke down and wept tears of relief.

At the same time, lactation ceased. And there was a wonderful 'side effect'. The consultant had said that the treatment might help with ovulation and could even help me conceive. And that's exactly what it did. The result is our gorgeous two-year-old girl, Tiger.

When I became pregnant, the consultant suggested I come off the drugs. The after-effect of the initial treatment kept the symptoms at bay but now, after two years without the drugs, some problems have returned.

My headaches are back and my periods have become irregular again. I recently put on some weight, just like before.

This has meant more scans and clinics with the endocrinologist and the neurologist.
Last time, these appointments gave me nightmares. This time I have been feeling much more confident and I am facing my uncertain future with fortitude, or endeavouring to at least.

We had been trying for another child without success and had considered IVF but that was on hold until we got the results of my most recent tests. They reaffirmed the previous condition and I am now back on the same medication and treatment.

Tragically, our friend Alexis was not so fortunate as I have been. He had what is called transsphenoidal surgery for his tumour - usually carried out by making a small incision on the inside of the roof of the nose or by making a small opening under the lip to be able to reach the pituitary gland. The singer Russell Watson underwent the same procedure to have a tumour 'the size of two golf balls' removed.

But Alexis didn't make it. He died last November at the age of just 46. His untimely death really brought home to Donal and me just what we are up against.

As a family we have now recalibrated our priorities. Wherever Donal works around the world, he tries to bring the children --school allowing - and me.

The world of television has never been particularly family friendly but we have decided to make the work fit around us, rather than vice versa.

It was me who decided - very much against Donal's will - that he should do the ITV show Dancing On Ice earlier this year, as I knew it would give him a chance to spend more time with me and the kids.

I don't think I've ever seen a man pushed so far outside his comfort zone, although he quickly grew to love it.

A tumour can change your life, and the lives of those around you, in ways you don't anticipate.

All the time Dancing On Ice was on air I was managing my reacquaintance with my old symptoms. At one stage during the last few weeks of the show, Donal considered dropping out to concentrate on looking after me but I wouldn't let him entertain the idea of quitting. It was a family experience we all shared and enjoyed, from baby Tiger to Allegra. Tiger would even hug the TV screen when Daddy appeared.

Because of my illness, Donal and I have become more spiritual. Donal is not particularly religious but he has always accepted that his Catholic heritage and Christian values are embedded in his DNA. In a way, he views religion as a celestial insurance policy - Pascal's Wager, the philosophers call it, after the French thinker who argued that there was much to gain and nothing to lose from believing in God.

I hesitate to say we have renewed faith, but we have decided to baptise the children into the Church. My family, who are Muslim, understand that we have to do what we feel is right for us. I am determined to be christened at the same time as the children.

Just recently Donal was attacked by thugs in a wine bar in Surrey. I was with him, having earlier in the day undergone another brain scan. I was punched and kicked during the attack and actually ended up with more bruises than my husband. But we're used to living with this kind of threat and now we are learning to cope with a different kind of danger.

My illness has changed us in ways we never expected - the arrival of Tiger, new directions in Donal's own career, a shift in our life philosophy. Surprisingly, the changes are almost all for the better. We know we will get through this.

Centre for hormone production that's the size of a pea

The pea-sized pituitary gland sits in the centre of the brain, just above the back of the nose. It is linked by a stem to the hypothalamus and both are vital in producing essential hormones for the growth and functions of other glands in the body.

The most common problem with the pituitary is when a benign tumour develops.

There are nearly 100 different types of brain tumour and about ten per cent of these are in the pituitary gland. More common in older people, they grow slowly and do not spread to other parts of the body.

There are six types of pituitary tumour, from tumours that produce growth hormones (which can cause acromegaly or gigantism) to prolactin-producing tumours (where the hormone stimulates a woman to lactate and disrupts her menstrual cycle).

Symptoms can also include headaches and visual problems caused by the tumour pressing on the optic nerve.

Treatment ranges from surgery to radiation therapy and drug therapy.

Read more: http://www.dailymail.co.uk/health/article-1205178/Now-I-know-feels-like-gun-held-head-Ameera-MacIntyres-battle-brain-tumour.html#ixzz0Nh9gw5SP

Does this disease make me look fat?

From http://calcitrix.livejournal.com/79399.html

For those of you new to my medical rambles, or needing a "previously on..."

I get vertigo, ear pain, headaches. My entire list of tests/things that have been tested for:
Glucose tolerance/diabetes
Hyper/hypo thyroid
Iron levels/other various things in the blood
Sinus/ear infections
Meniere's Disease
Benign Paroxysmal Positional Vertigo
Brain tumor (CT scan)
Tumor in the sinus cavity (CT scan)
Epilepsy/partial seizures (EEG)
Brain tumor (MRI)
Aneurysm (MRI)

Those were all normal. So yesterday I had a spinal tap. It wasn't as horrific as I thought it would be, in that it didn't hurt. But it was very much like getting a tooth drilled--it didn't hurt, but I could feel the pressure, and it was very, very disturbing. Ick.

So...they measured the intracranial pressure of my spinal fluid, and it was "elevated." I HAVE AN ACTUAL RESULT! Basically the cerebral fluid in my brain isn't draining or being re-absorbed properly, so I get "pressure" headaches that last for months at a time, and the pressure bleeds over into my ear canals, causing tinnitus, pain, and vertigo. It isn't official, because this is just what the doctor doing the spinal tap said, but he named it "pseudotumor cerebri." I still have to meet with my neurologist again, though.
So I looked up this condition, and basically it means that I have all the symptoms of a large brain tumor, but without the brain tumor. Instead of a tumor pushing against areas of my brain, my cerebral fluid is doing it. And on the various web sites, the first thing they name as a cause is being obese. Now...I'm no skinny minnie. But I'm a size ten, which I consider reasonable for a woman in her mid-thirties. I eat well, and my job involves lots and lots of walking and hiking and being outside. But one website, in the same sentence it used the word "obese," added the detail "at least 20% above ideal body weight."

Hmmm...so...at 5'4", I'm guessing my "ideal" body weight is about 125. Which makes "obese," in their opinion, 150 pounds. Uh, yeah, I'm a little over that. Screw you.
ANYWAY, two things stand out about the results of the spinal tap. One is that it actually makes sense for me to be affected by traveling in a plane. I thought it was really weird that I seemed to be much worse after flying somewhere, but the high altitude would certainly affect me.

Huh.

And looking up the causes of increased intracranial pressure didn't reassure me. "No brain tumor" sounds great, but if it's caused by Cushing's Disease, the underlying cause could be a tumor on the pituitary gland, adrenal gland, or in the lung. A tumor that releases hormones. Blearghch. Then there's all the stuff about going blind, which. Yeah.

But it could be one of those "for no apparent reason" things, and I'll get treated with medicine to make my brain pressure go down, and that will be the end of it.
So...end of chapter four. I see the neurologist in a week, and he'll tell me what's what.

About me

This is from my "official bio"

Around 1983 I first started to realize I was really sick. At first I noticed I'd stopped having my periods and, of course, I thought I was pregnant. I went to my Gynecologist who had no explanation. Then I got really tired. I would take my son to a half hour Choir rehearsal and could not stay awake for the whole time.

A whole raft of other symptoms started appearing - I grew a beard (Hirsuitism), gained weight even though I was on Weight Watchers and working out at the gym nearly every day, lost my period, everything hurt, got what is called a "moon face" and a "buffalo hump" on the back of my neck. I also got stretch marks. I was very depressed but it's hard to say if that was because of the hormone imbalance or because I felt so bad and no one would listen to me.

I came across a little article in the Ladies Home Journal which said "If you have these symptoms...ask your doctor about Cushing's". After that, I started reading everything I could on Cushing's and asking my doctors. Due to all my reading at the library, I was sure I had Cushing's but no one would believe me. Doctors would say that Cushing's Disease is too rare, that I was making this up and that I couldn't have it.

My husband just told me to think "happy thoughts" and it would all go away. A Neurologist gave me Xanax. Since he couldn't see my tumor with his Magnetic Resonance Imaging (MRI) machine there was "no possibility" that it existed. Boy was he wrong!

In late 1986 I started bruising incredibly easily. I could touch my skin and get a bruise. On New Year's Day of 1987 I started bleeding under the skin. My husband made circles around the outside perimeter each hour with a marker. When I went to my Internist the next day he was shocked at the size. He now thought I had a blood disorder so he sent me to a Hematologist/Oncologist.
I was also having trouble with my feet and walking, so I had the distinction of going to two doctors in one day, a Podiatrist in the morning and the Hematologist/Oncologist in the afternoon.

Fortunately, the Hematologist/Oncologist ran a twenty-four hour urine test and really looked at me. Both he and his partner recognized that I had Cushing's.

It was not yet determined if it was Cushing's Disease (Pituitary) or Syndrome (Adrenal). However, he couldn't help me any further so the Hematologist referred me to an Endocrinologist.

The Endocrinologist, of course, didn't trust the other tests I had had done so I was back to square one. He ran his own multitude of tests. He had to draw blood at certain times like 9 AM. and 5 PM. There was a dexamethasone suppression test where I took a pill at 10 p.m. and gave blood at 9 am the next day. I collected gallons of urine in BIG boxes (Fun in the fridge!). Those were from 6 a.m. to 6 a.m. to be delivered to his office by 9 a.m. same day. I was always worried that I'd be stopped in rush hour and the police would ask about what was in that big container. I think I did those for a week. He also did standard neurological tests and asked lots of questions.

When he confirmed that I had Cushing's he sent me to a local hospital where they repeated all those same tests for another week and decided that it was not my adrenal gland (Cushing's Syndrome) creating the problem. The doctors and nurses had no idea what to do with me, so they put me on the brain cancer ward.

When I left this hospital after a week, we didn't know any more than we had before.

As luck would have it, NIH (National Institutes of Health, Bethesda, Maryland) was doing a clinical trial of Cushing's. I live in the same area as NIH so it was not too inconvenient but very scary at first to think of being tested there. At that time I only had a choice of NIH, Mayo Clinic and a place in Quebec to do this then-rare pituitary surgery called a Transsphenoidal Resection. I chose NIH - closest and free. After I was interviewed by the Doctors there, I got a letter that I had been accepted into the clinical trial. The first time I was there was for 6 weeks as an inpatient. More of the same tests.

There were about 12 of us there and it was nice not to be alone with this mystery disease. Many of these Cushies (mostly women) were getting bald, couldn't walk, having strokes, had diabetes. One was blind, one had a heart attack while I was there. Towards the end of my testing period, I was looking forward to the surgery just to get this whole mess over with. While I was at NIH, I was gaining about a pound a day!

The MRI still showed nothing, so they did a Petrosal Sinus Sampling Test. That scared me more than the prospect of surgery. (This test carries the risk of stroke and uncontrollable bleeding from the incision points.) Catheters were fed from my groin area to my pituitary gland and dye was injected. I could watch the whole procedure on monitors. I could not move during this test or for several hours afterwards to prevent uncontrolable bleeding from a major artery. The test did show where the tumor probably was located. Also done were more sophisticated dexamethasone suppression tests where drugs were administered by IV and blood was drawn every hour (they put a heplock in my arm so they don't have to keep sticking me). I got to go home for a weekend and then went back for the surgery - the Transsphenoidal Resection. I fully expected to die during surgery (and didn't care if I did) so I signed my will and wrote last letters to those I wanted to say goodbye to. During the time I was home just before surgery, a college classmate of mine (I didn't know her) did die at NIH of a Cushing's-related problem. I'm so glad I didn't find out until a couple months later!

November 3, 1987, the surgeon, Dr. Ed Oldfield, cut the gum above my front teeth under my upper lip so there is no scar. He used tiny tools and microscopes. My tumor was removed successfully. In some cases (not mine) the surgeon uses a plug of fat from the abdomen to help seal the cut. Afterwards, I was in intensive care overnight and went to a neurology ward for a few days until I could walk without being dizzy. I had some major headaches for a day or two but they gave me drugs (morphine) for those. Also, I had cotton plugs in my nostrils. It was a big day when they came out. I had diabetes insipidus (DI) for a little while, but that went away by itself - thank goodness!

I had to use a foam product called "Toothies" to brush my teeth without hitting the incision. Before they let me go home, I had to learn to give myself an injection in my thigh. They sent me home with a supply of injectible cortisone in case my level ever fell too low (it didn't). I was weaned gradually off cortisone pills (scary). I now take no medications. I had to get a Medic Alert bracelet. I will always need to tell medical staff when I have any kind of procedure - the effects of my excess cortisone will remain forever.

I went back to the NIH for several follow-up visits of a week each where they did all the blood and urine testing again. After a few years NIH set me free. Now I go to my "outside" endocrinologist every year for the dexamethasone suppression test, 24-hour urine and regular blood testing.

As I get further away from my surgery, I have less and less chance that my tumor will grow back. I have never lost all the weight I gained and I still have the hair on my chin but most of my other symptoms are gone. I am still and always tired and need a nap most days. I do not, however, still need to take whole days off just to sleep.

I consider myself very lucky that I was treated before I got as bad as some of the others on my floor at NIH but think it is crazy that these symptoms are not taken seriously by doctors.

Update: Fall, 1999:

I went for my regular testing with my private endocrinologist.

Besides the annual testing, he told me that my pituitary gland is shutting down, so I must always have extra cortisone (Cortef) for any medical stress such as surgery or the flu.

Many people are now finding that they need HgH after pituitary surgery, so an Insulin Tolerance Test was performed. My endocrinologist painted a very rosey picture of how wonderful I'd feel on Growth Hormone. It sounded like a miracle drug to me!

I was only asked to fast before the ITT and to bring someone with me to take me home. There is no way I could have driven home. I got very cold during the test and they let me have a blanket. Also, though, lying still on that table for so long, my back hurt later. I'd definitely take - or ask for - a pillow for my back next time. They gave me a rolled up blanket for under my knees, too.

I don't remember much about the test at all. I remember lying very still on the table. The phlebotomist took blood first, then tried to insert the IV (it took a few tries, of course). Then the endo himself put the insulin in through the IV and took the blood out of that. I remember the nurse kept asking me stupid questions - I'm sure to see how I was doing on the consciousness level. I'd imagine I sounded like a raving lunatic, although I believed that I was giving rational answers at the time.

Then everything just got black...I have no idea for how long, and the next thing I knew I was becoming aware of my surroundings again and the doctor was mumbling something. They gave me some juice and had me sit up very slowly, then sit on the edge of the table for a while. When I thought I could get up, they gave me some glucose tablets "for the road" and called my friend in. I was still kind of woozy, but they let her take me out, very wobbly, kind of drunk feeling.

My friend took me to a close-by restaurant - I was famished - but I still had trouble with walking and felt kind of dazed for a while. When I got home, I fell asleep on the sofa for the rest of the day.

But the most amazing thing happened. Saturday and Sunday I felt better than I had for 20 years. I had all this energy and I was flying high! It was so wonderful and I hoped that that was from the HgH they gave me to wake me up.

I will have to take this test annually until I do I do qualify for HgH. I got a small taste of what I would feel like on this drug - that weekend I felt much better than I can remember feeling in a very long time. Hopefully, at some point, I will "qualify" for this drug, even though it means a daily injection. I would really like to feel better sometime - less tired, less depressed, more human.

In July of 2000, I was talking with my dear friend Alice, who runs a wonderful menopause site, Power Surge, wondering why there weren't many support groups online (OR off!) for Cushing's and I wondered if I could start one myself and we decided that I could. This website (http://www.cushings-help.com) first went "live" July 21, 2000 and the message boards September 30, 2000. Hopefully, with this site, I'm going to make some helpful differences in someone else's life.

The message boards are very active and we have weekly online text chats, weekly live interviews, local meetings, email newsletters, a clothing exchange, a Cushing's Awareness Day Forum, podcasts, phone support and much more.

Whenever one of the members of the boards gets into NIH, I try to go to visit them there. Other board members participate in the "Cushie Helper" program where they support others with one-on-one support, doctor/hospital visits, transportation issues and more.

My husband, Tom (pictured above) posted this on the message boards:

"I just read your description of the 9 year ordeal. I am Mary's husband and much of your story was familiar.

Mary diagnosed her own illness. After a prolonged journey from doctor to doctor.

After her surgery and recovery, I found myself at a neurologist's office for some trivial ailment and the place seemed familiar.

Then it dawned on me that I had been there before with Mary. This was one of the doctors who had failed to listen. Or perhaps simply had no knowledge base about Cushing's.

In any event, I stopped the process I was there for and changed the subject to the previous visit 4 years ago. I told the doctor to look up his records on Mary O'Connor and study them. Told him that what he would see in his files was a case of Cushing's, misdiagnosed as something that might respond to Valium.

I said he could learn something and perhaps help the next person who arrived with Cushing's.

Out of fairness to the medics, the ailment is so rare that a doctor can go his entire career and never see a single case. And it is certainly possible that the doctor may fail to diagnose the few cases they may see.

Mary's surgery was done at NIH. It came down to them or the Mayo Clinic. At the time we did not realize that NIH was free and we selected them over Mayo based on their success and treatment record. They were happy to learn they had beat Mayo without a price advantage. We were happy to hear it was free.

During the same time Mary was at NIH, another woman had the same operation. She came from Mary's home town. They were class mates at college. They had the same major. They were the same age. They had the same surgical and medical team. Mary recovered. The other woman died during surgery.

I am an aggressive person who deals directly with problems. I enjoy conflict and I thrive in it.

This experience made clear how little we control. And how much depends on the grace of God.

This year we celebrated our 28th anniversary. Our son has grown into a fine young man and is succeeding admirably in college.

Life is the answer. We keep going on....undaunted and ever hopeful.

Tom O'Connor"

Update July 26, 2001

I saw the endo today. My pituitary function is continuing to drop, so August 6, I'll Be having another ITT, as described above. Hopefully, after this one, I'll be able to take Growth Hormone and start feeling better!

Update August 6, 2001

I had the ITT this morning. I don't get any results until a week from Thursday, but I do know that I didn't recover from the insulin injection as quickly as I did last time. The endo made a graph for my husband of me today and a "normal" person, although I can't imagine what normal person would do this awful test! A normal person's blood sugar would drop very quickly then rise again at about a right angle on the graph.

I dropped a little more slowly, then stayed very low for a long time, then slowly started to rise. On the graph, mine never recovered as much as the normal person, but I'm sure that I did, eventually.

The test this time wasn't as difficult as I remember it being, which is good. Last time around, I felt very sweaty, heart pounding. I don't remember any of that this time around. I do know that I "lost" about an hour, though. The phlebotomist took the first blood at 9:15, then the endo injected the insulin and took blood every 15 minutes after that. I counted (or remembered) only 4 of the blood draws, but it was 11:30 when they told me that my sugar wasn't coming up enough yet and I'd have to stay another 30 minutes. It actually ended up being another hour.

Kim, the phlebotomist, asked me if I got a headache when they "crashed me" and I have no recollection of any of that.

Like last time, I was very, very cold, even with the blanket and my left arm - where the heplock was - fell asleep. Other than that - and my back hurting from lying on one of those tables all that time this wasn't as bad as I remembered.

So, I waited for 10 days...

Update Fall, 2002.

The endo refused to discuss my fatigue or anything at all with me until I lost 10 pounds. He said I wasn't worth treating in my overweight condition and that I was setting myself up for a heart attack. He gave me 3 months to lose this weight. Those 3 months included Thanksgiving, Christmas and New Years.

I know that I would like to lose weight, but I'd like to do it on my own terms, not over Thanksgiving, Christmas and New Years, not because this endo was rude about it. I left his office in tears. I'm now looking for a new one...

Update Fall, 2004

I left my previous endo in November of 2002. He was just too rude, telling me that I was setting myself up for a heart attack and that I wasn't worth treating. I had left his office in tears.

Anyway, I tried for awhile to get my records. He wouldn't send them, even at doctors' or my requests. Finally, my husband went to his office and threatened him with a court order, The office manager managed to come up with about 13 pages of records. For going to him from 1986 to 2001, that doesn't seem like enough records to me.

I had emailed NIH and they said that they would be "happy" to treat me, but it was long between emails, and it looked like things were moving s-l-o-w-l-y. I had also contacted UVa, but they couldn't do anything without those records.

Last April, many of us from the message boards went to the UVa Pituitary Days Convention. By chance, we met a wonderful woman named Barbara Craven. She sat at our table for lunch on the last day and, after we learned that she was a dietitian who had had Cushing's, one of us jokingly asked her if she'd do a guest chat for us. I didn't follow through on this until she emailed me one day last summer. In the email, she asked how I was doing. Usually I say "fine" or "ok" but for some reason, I told her exactly how awful I was feeling.

Barbara emailed me back and said I should see a doctor at Johns Hopkins. And I said I didn't think I could get a recommendation to there, so SHE referred me. The doctor got right back to me, set up an appointment. Between his vacation and mine, that first appointment turned out to be Tuesday, Sept 14, 2004.

Just getting through the maze at Johns Hopkins was amazing. They have the whole system down to a science, moving from one place to another to sign in, then go here, then window 6, then... But it was very efficient.

My new doctor was wonderful. Understanding, knowledgeable. He never once said that I was "too fat" or "depressed" or that all this was my own fault. I feel so validated, finally.

He looked through my records, especially at my 2 previous Insulin Tolerance Tests. From those, he determined that my growth hormone has been low since at least August 2001 and I've been adrenal insufficient since at least Fall, 1999 - possibly as much as 10 years! I was amazed to hear all this, and astounded that my former endo not only didn't tell me any of this, he did nothing. He had known both of these things - they were in the past records that I took with me. Perhaps that was why he had been so reluctant to share copies of those records. He had given me Cortef in the fall of 1999 to take just in case I had "stress" and that was it.

The new endo took a lot of blood (no urine!) for cortisol and thyroid stuff. I'm going back on Sept. 28, 2004 for arginine, cortrosyn and IGF testing.

He has said that I will end up on daily cortisone - a "sprinkling" - and some form of GH, based on the testing the 28th.

So, in a couple weeks, I might start feeling better! Wowee!

For those who are interested, my new endo is Roberto Salvatori, M.D.
Assistant Professor of Medicine at Johns Hopkins

Medical School: Catholic University School of Medicine, Rome, Italy
Residency: Montefiore Medical Center
Fellowship: Cornell University, Johns Hopkins University
Board Certification: Endocrinology and Metabolism, Internal Medicine

Clinical Interests: Neuroendocrinology, pituitary disorders, adrenal disorders

Research Interests: Control of growth hormone secretion, genetic causes of growth hormone deficiency, consequences of growth hormone deficiency.

Update October, 2004

I had cortrosyn and arginine-GHRH stimulation test at Johns Hopkins. They confirmed what the doctor learned from reading my 4 year old records - that I'm both adrenal-deficient and growth hormone-deficient. I started on my "sprinkle" (5 mg twice a day) of Cortef now and my new doctor has started the paperwork for GH so maybe I'm on my way...

Yea!!!

It feels weird to be going back on the cortisone after being off for so many years but at this point, I think I'd sell my soul to the devil not to feel the way I've been feeling for the last several years.

Update November, 2004

Although I have this wonderful doctor, a specialist in growth hormone deficiency at Johns Hopkins, my insurance company saw fit to over-ride his opinions and his test results based on my past pharmaceutical history! Hello??? How could I have a history of taking GH when I've never taken it before?

Of course, I found out late on a Friday afternoon. By then it was too late to call my case worker at the drug company, so we'll see on Monday what to do about an appeal. My local insurance person is also working on an appeal, but the whole thing sounds like just another long ordeal of finding paperwork, calling people, FedExing stuff, too much work when I just wanted to start feeling better by Thanksgiving. I guess that's not going to happen, at least by the 2004 one.

As it turns out the insurance company rejected the brand of hGH that was prescribed for me. They gave me the ok for a growth hormone was just FDA-approved for adults on 11/4/04. The day this medication was approved for adults was the day after my insurance said that's what is preferred for me. In the past, this form of hGH was only approved for children with height issues. Am I going to be a ginuea pig again? The new GH company has assigned a rep for me, has submitted info to pharmacy, waiting for insurance approval, again.

Update December 7, 2004

I finally started the Growth Hormone last night - it's like a rebirth for me. I look forward to having my life back in a few months!

Update January 3, 2005

After a lot of phone calls and paperwork, the insurance company finally came through at the very last minute, just as I needed my second month's supply. Of course, the pharmacy wouldn't send it unless they were paid for the first month. They had verbal approval from the insurance, but the actual claim was denied. Talk about a cliff hanger!

Update January 25, 2005

I've been on the growth hormone for 7 weeks now, and see no change in my tiredness and fatigue. A couple weeks ago, I thought there was a bit of improvement. I even exercised a little again, but that was short lived.

I feel like my stomach is getting bigger, and Tom says my face is looking more Cushie again. Maybe from the cortisone I've been taking since October. I can't wait until my next endo appointment in March to increase my GH. I want to feel better already!

Update March 21, 2005

My endo appointment is over. My endo thinks that my weight gain is from the cortisone, as I'd suspected. He cut that amount in half to see if I would stop gaining weight and maybe lose a little. Because of the adrenal insufficiency, I can't completely stop it, thought. My IGF-1 was "normal" so I can't increase the GH.

I made a vacation of this trip, though. A friend and I stayed 2 nights in a hotel and had some fun. The hotel had an indoor pool, hot tub, sauna, exercise room, wireless internet access, free shuttles to Johns Hopkins and the Baltimore Inner Harbor. We had a good time for ourselves, so I came home from this endo trip more tired than ever. Over the weekend, I took 7-hour naps on both Saturday and Sunday. Hopefully, that will get better as my body adjusts to the loser dose of Cortef.

Update September, 2005.

My last endo appointment I had lost some weight but not enough. My energy levels are down again, so my endo increased the cortisone slightly. I hope I don't start gaining again. I don't see any benefit with the growth hormone.

Update January, 2006.

A new year, a new insurance battle. Once again, they don't want to pay so I have to go through the whole approval process again. This involves phone calls to Norditropin (the company that makes the GH), my endo, iCore Specialty Pharmacy (the people who prepare and ship the meds) and my insurance company. This is turning into a full-time job!

Update April 14, 2006

I just went to see my endo again on Thursday to see how things are. Although I know how they are - I'm still tired, gaining a little weight, getting some red spots (petechiae) on my midsection. He also noted that I have a "little" buffalo hump again.

My endo appointment is over. Turns out that the argenine test that was done 2 years ago was done incorrectly. The directions were written unclearly and the test run incorrectly, not just for me but for everyone who had this test done there for a couple years. My endo discovered this when he was writing up a research paper and went to the lab to check on something.

So, I'm off GH again for 2 weeks, then I'm supposed to be retested. The "good news" is that the argenine test is only 90 minutes now instead of 3 hours.

Update June 2, 2006

Wow, what a nightmare my argenine retest started! I went back for that Thursday, April 27, 2006. Although the test was shorter, I got back to my hotel and just slept and slept. I was so glad that I hadn't decided to go home after the test.

Friday I felt fine and drove back home, no problem. 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 anaesthetic 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.

They took me in pretty fast since I was in so much pain, and had the blood in my urine. They thought it was a kidney stone. After a CT scan, my new doctor said that, yes, I had a kidney stone but it wasn't the worst of my problems, that I had kidney cancer. Wow, what a surprise that was! I was admitted to that hospital, had more CT scans, MRIs, bone scans, they looked everywhere.

My open radical nephrectomy was May 9, 2006 in another hospital from the one where the initial diagnosis was made. My surgeon felt that he needed a specialist from that hospital because he believed preop that my tumor had invaded into the vena cava because of its appearance on the various scans. Luckily, that was not the case.

My entire left kidney and the encapsulated cancer (10 pounds worth!) were removed, along with my left adrenal gland and some lymph nodes. Although the cancer (renal cell carcinoma AKA RCC) was very close to hemorrhaging, the surgeon believes he got it all. He said I was so lucky. If the surgery had been delayed any longer, the outcome would have been much different. I will be repeating the CT scans every 3 months, just to be sure that there is no cancer hiding anywhere. As it turns out, I can never say I'm cured, just NED (no evidence of disease). This thing can recur at any time, anywhere in my body.

I credit the argenine re-test with somehow aggravating my kidneys and revealing this cancer. Before the test, I had no clue that there was any problem. The argenine test showed that my IGF is still low but due to the kidney cancer I cannot take my growth hormone for another 5 years - so the test was useless anyway, except to hasten this newest diagnosis.

Update August 19, 2006

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.

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...

Update October 26, 2006

I went to see my Johns Hopkins endo again last week. He doesn't "think" that my cancer was caused by the growth hormone although it may well have encouraged the tumor to grow faster than it would have.

He was happy to see that I had lost 22 pounds since my last 6 month visit. Not all of that was from surgery! He reminded me that I can take more cortisone, but I hate to do that because I gain weight so fast when I take more.

He thought that my blood pressure was low - for me, not for "normal" people. He took my pressure several times, lying down, getting up quickly. But I never got dizzy. Maybe my pressure increase was temporary when the cancer started. All these mysteries I have that no one can answer.

My energy levels are lower than when I was on GH, and they're lower again because I had the adrenal removed, because of my panhypopit, because of my cancer even though currently NED, it can come back at any time, because of my GH deficiency...

Every day is a challenge getting up, doing something useful, doing something without arthritic pain and weakness, having the energy to finish even something "easy". I'm starting to get very depressed over all this. If this is the way the rest of my life is going to be, why bother?

People mostly assume that everything is OK with me because I am not getting chemo or radiation and because I look so "healthy" (thanks to the Cushing's/daily Cortef!). They figure that if there was any real danger of the cancer metasticizing that I would be on chemo, like other cancer patients do. They don't understand that I have to wait and pray because there are no approved ajuvant treatments. If/when my cancer returns, it's just more surgery. If I'm "lucky" enough and get to a stage 4 THEN I can have chemo/radiation as a pallative measure.

Update December 2006

According to my PCP my blood pressure is truly low. But can I go off these bp meds? Nope...because I have only one kidney, these would have been prescribed anyway as a support for my kidney. Can't win!

I am maintaining my weight loss but none of my clothes are loose, I can't fit in anything smaller. Belly is still there. So the weight loss is just a numbers game.

Update March 2007

I posted this on the message boards in late February but many missed it and are still asking...

Walking Wounded, the sequel!

Wow! I guess I haven't been on the boards for 2 weeks or so. I see that I have dozens of PMs to read, many emails to check/answer and I missed at least one person who had ordered an Awareness Bracelet that I never sent.

My Monday appointment with the surgeon went ok. He took blood/urine and was going to send me for CT scans. That day, as I recall was very cold here with a wind chill of something like -7o

I came home and taught my piano students, as usual.

Tuesday morning I woke up and my back hurt. I assumed it was from the cold combined with my arthritis. That got worse throughout the day so I called my PCP. Naturally, he was away until the 19th but had a substitute I could see Wed. I didn't want to wait because the pain was excruciating by now and I couldn't get out of chairs or sofa without using the walker I had from surgery to help pull me up.

So I called my husband at work and he said he'd come home and take me to the ER. I had been supposed to have handbell rehearsal that night so I called my director and let her know I wouldn't make it. She assumed that Tom (husband) would be home sooner than he was, so she got the associate pastor from my church and they headed to the ER to wait with us.

They asked about me at the front desk and were assured that I was there although they didn't see me. I guess they thought I was with the triage nurse or something. So they waited. Then a Melissa O'Connor was called... My people realized it wasn't me and left.

Finally, Tom got home - he had really important work to do (sarcastically said!) and I got to the ER about 6:00PM. Last time I was there, they told me I had kidney cancer, so I was hoping that there was no rerun of that experience!

The triage nurse let me wait on a gurney instead of one of the hard plastic chairs in the waiting room.

Unfortunately, they also wanted blood and urine. My only good arm had been used by the neurosurgeon the day before. Luckily the nurse finally got the IV in to my other arm. I guess my veins are a bit better post-Cushing's. No collapses this time.

They did CT scans (so I don't have to do my surgeon's ones - YEA!) and XRays and found basically nothing except lung nodules that hadn't grown much since my last scan - say what? I didn't know I HAD lung nodules.

I got some percocet and they sent me home with orders to see the sub PCP in 2 days. The percocet didn't do much except make me sleepy/groggy. My days were spent watching TV and sleeping. Even sitting at the computer or the table was too painful.

Tom took me to the sub PCP on that Friday and she's sending me to physical therapy.

Until yesterday, I didn't drive at all, and the weather has been awful, so I haven't even called about the PT yet.

There is still a little pain, and I need the walker to get out of bed, but I'm doing much better.

A weird side thing - Tom was driving my car since it's a van and much heavier than his midlife crisis sports car. The van does much better with snow and ice that we had the last couple weeks.

One day he got it home, slammed the door - and the window slid down into the door. Somehow it got off the tracks. Luckily the glass didn't break. So that was a bit of a problem and $$. No one had ever even heard of this problem before.

Anyway, I hope to get to your PMs, emails and whatever ASAP!

It feels a bit weird being here - like my baby has grown up, left home and doesn't need me anymore. Can you have Empty Nest Syndrome for message boards? LOL

I have started a new Blog called Cushing’s, Cancer & Music and I plan to keep that updated a little more often than this bio. Rather than the actual events that have taken place, I am letting some of my pent-up feelings out. NOTE: This blog was destroyed by hackers in June 2008 :( I don't know when or if I will ever have the energy to rebuild it.

On an Alaskan cruise, June 2007. More about the cruise.

As of the Columbus meeting July 21, 2007 I have met 70 members of the message boards (listed as Friends) in addition to Cushies who are NOT on the boards! I have travelled to meet Cushies at NIH in Bethesda, MD, Ohio, Pennsylvania, Oklahoma, Michigan, Wisconsin, Illinois, New York, Florida, Tennessee, Connecticut, UVa in Southern Virginia and Oregon.

I was so stupid way back in 1987 when I thought that all my troubles would be over when my pituitary surgery was over.

And so I wait...

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Cushings-Help.com, and quotes from MaryO was included in the Cover Story of this issue of Forbes Magazine, Best of the Web Issue. The title: "Use With Care" by Matthew Schifrin and Howard Wolinsky.

Hopefully, this kind of mainstream exposure will help increase awareness for this often misunderstood disease. Read the article here.

VOICE Chat
Listen live to an archived interview from Thursday, January 3, 2008 with MaryO. Achived audio is available through the Podcast page of this site, BlogTalkRadio, the CushingsHelp Podcast or through iTunes Podcasts

Jayne and Robin also hosted a Special Cushing's Awareness Day live chat April 8, 2008. This chat included a lot of comments about MaryO. Archives are available.