From Kate, one week post op: http://cushings.invisionzone.com/index.php?showtopic=19414

Hello, my dear friends,

It is strange to be writing to you from the other side of surgery (well, at least this time somewhat coherently, as my prior post-op posts have been, let’s say, lubricated nicely by some very nice pain pills). It seems not too long ago, I was writing my introduction post back in August, then posting questions about testing, months of which are now thankfully over.

Some of you may remember my first posts, and I can’t believe that it’s only been 5 months ago that I was telling my story and searching for answers. Today, I post both because I learned some things through the surgical process, which I wanted to share with those of you who may be doing this after me. But I also post because this is my denouement…the post-climactic events in my Cushing. (Don’t worry, though — I’m not going to leave!)

PRE-OP SUGGESTIONS:

1. IN-PERSON PRE-SURGICAL CONSULT
Go see the surgeon in advance of surgery. If you can afford to actually go see the surgeon face-to-face ahead of time, I recommend it. This is brain surgery. Yes, it’s an additional expense for travel, but if you can, make it happen. You will thank yourself, and you will walk out of that consult with a clear confirmation whether the surgeon will perform your surgery or whether there may be additional tests, labs, reports, referrals, etc. needed prior to that agreement.

Because I’d been fortunate to have this consult, by the time I reached the surgeon on Wednesday (before the Friday surgery) to drop off my films, he basically said, “We already met, and I have nothing to add to our prior conversation, but I’d be glad to answer any questions you may have at this time.” The appointment lasted about 2 minutes. Seriously. I think having met the surgeon and him having already agreed to do my surgery meant that no questions were left to be answered — by either of us — by the time I went for the operation.

2. INSURANCE: Make sure your insurance is in order. You probably need a referral to the surgeon for “evaluation and treatment”; this referral comes from your PCP to the surgeon. Most surgeon’s offices will handle the preauthorization with your insurance company for you. Mine did. Still, for my own peace of mind, I checked with my insurance company more than once to make sure that they had the preauthorization approved.

3. PAPERWORK:
A. LABS – Even if you’ve had a pre-surgical consult, or even if you’ve mailed your labs ahead of time, PLEASE do yourself a favor and go to surgery with your paperwork in perfect order. This means even if you have your films and labs already in the hands of the surgeon, ALSO bring a copy of your labs with you!

B. REFERRAL – This next one is non-negotiable: HAVE A REFERRAL FOR SURGERY BEFORE you arrive for surgery. If possible, have a copy of this written referral in your hands. You can arrange this by having your referring endocrinologist copy you on the referral letter/email. Just print it out and make it part of your folder. You cannot self-refer for surgery. You MUST have a referring endocrinologist confirm your diagnosis, the basis for the Dx, and put in writing his recommendation and referral for surgery. If you do not have this, then do not expect to pass go or collect $200. Them’s just the facts.

C. PRE-SURGICAL PHYSICAL REPORT – You will have to have a pre-surgical physical. There will be bloodwork, and EKG, possibly a cardiac workup (if necessary), a chest X-ray, and whatever else your surgeon and PCP feel may be necessary to ensure your safe release for surgery. Once all of these tests are completed, it is then necessary to ensure that the report actually makes it to the surgeon’s office. I learned this the hard way because I’d coincidentally had a pre-surgical physical for the cancelled IPSS, which had been scheduled as the same day I had surgery instead. Although I’d anticipated that my physical report would therefore wind up at UCLA (where the IPSS was scheduled) instead of Pittsburgh (where surgery was scheduled), and even though this did in fact happen, it only took a couple of phone calls to make sure my surgical clearance report finally made it to the surgeon’s office. Two days before surgery, or more (if you have more notice than I did), just sit down for an hour or two and make phone calls to make sure everything is in order and where it needs to be.

D. SELF-CREATED SURGICAL PACKET – Once all of the above is accomplished, the most helpful thing you can do for yourself is to put together a packet to take with you to the surgeon:

• Labs
• Concise list of labs (listing all high numbers, dates, times categorized by test type)
• Referral letter from your endocrinologist with the diagnostic basis for your referral
• Films (Originals AND/OR on CD — I brought both)
• Pre-Surgical Physical report from Primary Care Doctor

I put my referral letter on top, my own synopsis list of labs under that, then the labs, then the physical report, and I had the clipped together and handed to the surgeon’s staff upon my arrival. Maybe some of it was duplicitous, but that way, they had everything they could need at their fingertips.

4. PACKING: Pack well, but lightly. You won’t be wearing a lot of clothes, and there are only so many nightgowns you can wear. Take two sets of clothes and two nightgowns, a robe and some slippers with outdoor-type soles, and then slog around in those slippers even after surgery when you are back in clothes and traveling. My sweetie husband bought me some UGG slippers with shearling insides and rubber soles, and I haven’t taken them off since I got out of surgery — even wore them to the doctor yesterday, the lab for draws on Tuesday, and plan to wear them until I am feeling like my feet don’t need the comfort of something soft and warm again.

I think Mary printed my packing list in one of the recent newsletters, but I just wanted to confirm YOU DON’T NEED TO TAKE MUCH STUFF. I didn’t feel like reading, playing cards, or even really watching TV. So unless you are going somewhere where they do a traditional rather than endoscopic approach (meaning you will be in the hospital more than overnight), skip the toys and such. Every other need you have will be met by the hospital.

5. PRESCRIPTIONS – Get your regular med AND post-surgical meds filled prior to leaving your hometown, if possible. This includes cortef AND injectable solucortef PLUS syringes. Not all pharmacies stock this stuff, so plan ahead a couple of days so they can order it if necessary.

6. BUY A PIK-STICK – This is a thing with a handle on one end and pinchers on the other, which will help you retrieve things off the floor post-op. Trust me, this is a good purchase. $15 at your local pharmacy or Walmart, etc.

7. PREPARE YOUR ENVIRONMENT FOR POST-OP – Get your house clean. Hire someone if you can’t do it or don’t have family to help. I’ve never had help, and this was the best thing I did for myself. I came home to a spotless house, which relieved a lot of stress.

Plan where you will sleep upright after surgery. A recliner or a chair with ottoman and pillows both work well. Gather bed pillows to prop under legs. Have a small table next to whereever you will sleep/spend the day. Put lip balm, a coaster for drinks, Puffs Plus with lotion tissues on it, and anything else you think you will need close at hand.

Make arrangements for who will help care for you post-op. You will need intense care for at least a week, and maybe two. Don’t be shy to ask people for help, and tell them to bring food rather than flowers. I have enough soup in my freezer for a month, and I don’t have to worry about cooking for my husband….nice!

8. SAY GOODBYE TO WORK FOR A WHILE – Don’t do what I did and take work to the hotel with you. If you had appendicitis, they would live without you. No one is indespensible. This used to bother me; this week, I am appreciating the revelation. Tell everyone you need limited contact, few visitors if any and NO STRESS after surgery.

SURGICAL SUGGESTIONS

1. LOCATE THE ROUTE TO THE HOSPITAL IN ADVANCE – Find your way to the hospital before the day of surgery. Or, do like I did and arrange to stay in a hotel near the hospital that has a shuttle service. Then, arrange for the shuttle to pick you up half an hour before your appointed registration time. If going to Pittsburgh, I cannot recommend enough staying at Springhill Suites in Northshores, 1 mile from Allegheny Hospital. They took us everywhere we needed to go, including downtown to a pharmacy. For free.

2. MAKE A LIST OF PHONE NUMBERS TO CALL AFTER SURGERY – Take a list of phone numbers for your family members to call when you are out of surgery. You won’t feel up to it yourself, but they will be delighted to let your friends and other family know how you made out. I confess my list was developed from my cell phone call log after I was already registered and waiting to go down to anesthesia….which is only to say if my mother didn’t call you after my surgery, it does NOT mean you are not my dear friend — it only means I couldn’t quickly access your number from my call log in order to give it to her. I wish I’d written the list out in advance, though, because it relieved me to know people knew the outcome as I knew they were waiting to hear.

3. CHILL OUT, THE SYNTHETIC WAY (IF NECESSARY) – If you are like me — someone who has not done a lot of surgery, and also hasn’t taken a lot of tranquilizers — I HIGHLY RECOMMEND GETTING TUNED IN by some Xanax, Valium, Ativan or the like immediately after registration. Now, of course I had to arrange for this medication prior to surgery, and I did this through my PCP who thought it was a great idea to have something for anxiety. Then, I did not take it until I had cleared it with the surgical team after admission to the hospital. If you talked to me on the morning of surgery as I waited to go down, you probably had a good laugh. I’m a real hoot on 2 mg of Ativan, as Robin may attest!

The net effect of the tranquilizer was that by the time they wheeled me down to anesthesia, I was not only ready for surgey, I was okay with it, not scared, kind of excited to be moving forward after all of the waiting, making funny small talk with the hospital staff, etc. Maybe you won’t need this, but for me, drugs….mmmmmmmm, mmmmmmm, goood!

4. TEE TEE BEFORE CHANGING INTO HOSPITAL GOWN – Use the bathroom BEFORE putting on the surgical gown. I had gone before leaving the hotel, and since I hadn’t eaten or drank anything, I thought I wouldn’t need to go. Then I found myself in a 2 hour wait down in the anethesia area, and suddenly I had to tinkle. It was, I’m sure, a pretty sight to see me hobbling down the hallway in that surgical gown, in those ugly socks (that are not shaped like feet, by the way), all zonked out on Ativan and waving at people.

Where I had surgery, they did NOT use a catheter, by the way.

5. WARM BLANKIE WHILE WAITING FOR SURGERY = GOOD STUFF – Tell them you are cold, even if your temperature is just right. That warm blanket was so comforting. Made me feel all snuggly and nice. A pre-surgical hug, if you will.

6. PREPARE INFO FOR SURGICAL TEAM – Tell your anesthesiologist/s EVERYTHING about yourself. Mine was a complicated case because of my sleep apnea, which is (was?) severe. They had prepared to intubate me while awake, if necessary. By the time I had the Versed, I truly, truly would NOT have cared!!! I was so ready for surgery by the time they wheeled me in and gave the Versed, I would have pushed the tube down for them if necessary. But because anesthesia is a risk in and of itself, be SURE to tell them about ANY breathing problems you have, even asthma, some congestion from a lingering cold, apnea, whatever. I wound up in ICU — briefly — after surgery, just as a precaution.

7. VERSED: THE POINT OF NO RETURN – Watch your mouth after the Versed. It will give you loose lips!!! Who knows what gems may have come out of my mouth….the one thing I remember was trying to hook up Dr. D with Robin’s daughter, Sarah Beth. I do think I also told him he was Dr. D — for “Dreamy.” This was right before he told me he was married, and then the next thing I knew, I was in recovery.

8. SURGERY WAS NOT THAT BAD!!!! Mine lasted 2 1/2 hours. I had it endoscopically by Dr. J, who I am convinced is a world-class surgeon. It went “perfectly,” according to my surgeon. Although I had a wicked headache and a nosebleed every time I stood up, it really was not that bad. Kind of like a migraine plus a low-grade flu, and the pain meds hooked me right up. I was doing so well that by 8 a.m. the next day, they had released me from the hospital. I elected to stay until 12, though, to get my last dose of pain meds before adiosing the hospital.

For those who asked, my tumor was 5mm on the right side, had grown down into and around my septum, had been there for years to have grown in that fashion, was not recognized by the radiologist who initially read my MRI, was seen as curiously small on film by the 3 surgeons who did recognize it, and had a 3mm extension/second tumor on the left side of the pit. Dr. J and Dr. D assured me that they felt they got it all and that they had even milked the gland afterwards, though I don’t know what that means.

My tumor stained positive for ACTH, and there was plenty for pathology. I have not received the official report, but at 6 a.m. the morning after surgery, Dr. D gave me the truly overwhelming news that I had pathology-proven Cushing’s. I wept, pumped his hand up and down, called my husband at the hotel, and according to my mom, my husband met her for breakfast with tears streaming from utter relief and validation at this news.

P.S. Have been told that my gland was preserved and that I may be able to get pregnant. After all this time. Despite Dr. W, my repro endo who for seven years never tested me for Cushings and told me I had PCO.

NOTE FOR THOSE INTERESTED: Remember that Jan. 9th appt. I’d scheduled back in the fall with Dr. W, the one they were really reluctant to schedule? I got a call on Jan. 8th at 8 a.m. from the office manager for the fertility practice informing me that Dr. W retired on Jan. 1. Veddy, veddy interesting. I think my malpractice attorney will find this news to be interesting as well.

9. STAY IN THE HOSPITAL TWO NIGHTS IF YOU WANT TO! I wound up staying back at the hotel the night after surgery, but it would have been nice to have been in that hospital bed, having a nurse bringing me Sprite Zeros and soft, nuggety ice and helping me to the bathroom. However, most medical professionals will agree that it’s best to get out of the hospital as soon as you really safely can — there’s a lot of sick folks and germs in that place, after all!

10. P-BURGH = EXCELLENT CHOICE – If you choose to have surgery in Pittsburgh, you will be treated like royalty at every step of the way. Top-notch facility, private room with a stunning view of the city, comfortable bed, constant attention, true compassion from staff, support for your family as they wait for news of your successful procedure.

POST-OP
1. TRAVELLING AFTER SURGERY – Zonk up on pain meds and suck it up and do it. Home is better than hotel, and you won’t remember much of the trip if you are on meds and have help from family to do it right. If travelling by car, take pillows and snuggly blankets.

2. PAIN – For me, there wasn’t a lot. Then again, I chose to spend the first three days cross-eyed and drooling on Percocets before realizing I didn’t really need them. I am still taking one at night to sleep or if I get a headache. But we are talking normal headache now, not the hatchet kind.

3. CONGESTION – You will have some, but keep in mind some of that is surgical swelling and not congestion. I learned this at my PCP yesterday who said she could see the tissue swelling. Mucinex works wonders for getting packed mucus to drain, but then expect some coughing as it tickles the throat. Some folks have used humidifiers, hot bowls of water with salt and a towel over the head, throad lozenges, saline sprays and mists, nose pots to rinse the sinuses. I’ve done the hot bowl of water twice, and hot showers. It’s been one week, and the congestion is pretty much over.

NO: Nose blowing, snuffing up, hocking loogeys, back-swallowing. Also, no bending, reaching down, straining to get up or have a bowel movement (or, as I discovered last night, doing the long cat-stretch while making the cat-stretch noise – OUCH!)

YES: Drinking hot tea, following list above, laying your head back and letting it drain down your throat, sucking it up and realizing it is temporary. LET OTHERS DO FOR YOU. This is not the time to be superwoman.

4. MEDICATIONS – Buy a seven day pill box, then fill it with what you need for the day.
Set up “Crisis Central” with your crisis letter from your endo to take to the ER if necessary (also give this to your PCP ASAP), your solucortef injectable WITH syringes, instruction sheet on how to give the shot, etc. Take your medications on time. Make sure they remain filled and call early to refill.

5. AVOID STRESS – No work. Very few phone calls. Limit internet for at least one week, maybe more. No arguing or debating with anyone about anything. Let others take care of you, even if you’ve never done this before in your life.

6. SLEEP A LOT. Your body needs it to recover.

7. SNUGGLY BLANKET = BEST FRIEND after surgery. I got a microfleece blanket from Target, and it has been across my lap during the day and draped over me at night. It feels like being enveloped in warm marshmallow cream, or Cool Whip. Very good $29.99 expenditure. Added bonus if you have a sweet lap dog to curl up with you.

8. LISTEN TO YOUR BODY – Mine, at least, has been telling me things: hunger, pain, stress, anxiety, fatigue, weakness, energy, etc. Respond accordingly: take pain meds for pain, eat healthfully and in small amounts when hungry (or else nausea will ensue), take meds on time, don’t be afraid to take Xanax or the ilk when stress comes on. I am managing some of these meds with my PCP, who thinks keeping things on a very even keel is a good idea. Since this is new to me, Ms. Intensity, I’m having to ease through this medicinally. Deep breathing exercises work, too.

9. SHOWERING – helps break up congestion and is a good way to perk up if you are feeling low. Just, be careful showering if you are weak. I take my cortef, then shower 45 minutes later when I have some energy. Then settle back down and be quiet. Your body needs stillness and quiet to heal.

10. DON’T PUSH IT. For me, post-op has been pretty much a breeze. No intense pain, only moderate nausea, pretty good adjustment to cortef. I do note I am emotional and somewhat unable to process simple stressors. For instance, even going over to the in-laws for a simple meal was too much last night, one week post-op. So I am doing things like letting the answering machine answer for me, etc. Build a cocoon, then live in it for a while. After years of Cushing’s, YOU DESERVE IT (ME, TOO!)

http://cushings.invisionzone.com/index.php?showtopic=19291&st=80

Kate’s Top Ten List of Pituitary Surgery Observations (In No Particular Order)

1. Presurgical jokes referencing your brain tumor as the cause for your apparent failing memory should be used judiciously; I only got two laughs out of at least a dozen tries.
2. One-size-fits-all hospital gowns actually come in two ranges: Regular Folks…and Great Big Ma’ama Jamma!!!! (Even that one swallowed me, and I’m a big ‘un!)
3. Cost of red plastic hospital bracelet on which the nurse clearly wrote, “Allergic to latex, bandaids and adhesives”: $2.50. Cost of roll of adhesive tape subsequently used in mass quantities on inner elbow by same nurse after serum draw: $4.00. Bic pen used by mother of patient, after pulling off tape and noting angry rash, to write on patient’s inner arm funny frowny-faces and long arrows pointing to residual rashes: Priceless.
4. “Your surgery will be mid-morning and should last about two hours.” Translation: “Register promptly at 7:15 a.m. and then plan to wait twelve hours before seeing your family again.”
5. When the lady in recovery keeps calling your name and telling you she needs you to wake up, this is NOT the same thing as when you were a teenager and your mom threatened to get a glass of water while you turned over to go back to sleep. They really mean that s*&% when they say they want you to wake up!!
6. “Hey, what’reyou in here for?” = not a great opener when striking up a conversation with guy moaning next to you in recovery.
7. Two words upon standing, post op: Nose bleed!
8. Time between requests for beverages: 30 minutes. Time between trips to the bathroom to tinkle: 60 minutes. Time between doses of pain meds: 240 minutes. I know, because I counted! (like, for the past 24 hours!)
9. Never again will you so carefully examine your boogers and snot for evidence of the dreaded clear fluids (indicative of CSF leak). “Hey, Mom, does this look pink or red to you?”
10. Transnasal transsphenoidal endoscopic pituitary microadenectomy: as close to drive-through brain surgery as you can get!

Amazing! It’s Been 5 Years, Already.

Today is the Fifth Anniversary of my kidney cancer surgery.  These five years have been bonus years for me.  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.

• 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).

In 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 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.

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 smile.gif

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…

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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

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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

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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 gall bladder, too, but they didn’t remove the gall bladder – which is a good sign.

It appears as though everything was concentrated in the kidney.

Thank God. It’s over!

Alice

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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

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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 sad.gif

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!

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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!

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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…

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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.

Beautiful sunsets help, too!

We’ve had quite a bit of discussion on this topic on the Cushing’s Help message boards lately.  A few samples:

We live in a part of Ontario known as “the Chemical Valley”. We are surrounded by Dow Chemical, Imperial Oil, Dupont, British Petroleum, Shell Oil and about 12 other chemical plants.
There has been many people complaining about the high rate of cancer in our area and the government was forced to do a health study in our area but as of yet they haven’t figured out how to do the testing. My guess is they don’t want us to know how sick we really are.
We are part of the Goiter Belt which I think extends to PA. There are very few people here who do not have thyroid problems.
My 2 brothers and 2 sisters are suffering the same as I am and so are all our children! Both my parents died in their 50′s from untreated hypothyroid disease. Probably had adrenal/pituitary damage too when I think about their symptoms.
I see hypothyroid people everywhere I look and have since started checking for the hump and cushing signs.
Holy endocrine system Batman, I think we are all suffering at the hands of the Big Oil Companies. My husband works for British Petroleum!!!!

I hate to even think about it. Growing up in Buffalo – erie county new york, which is nestled between lake ontario & lake erie, I don’t believe the water is safe to drink. There are several epa areas of concern around lake ontario & lake erie. AOC’s (areas of concern) are highly polluted areas. Specificlly erie canal & buffalo river are awful. I found out some years ago that a playground that I frequented as a child was a landfill for hazardous chemicals. Now I have a pituitary tumor, coincidence? Probably not

I live near Green Bay WI, which is part of Lake Michigan. I believe our drinking water comes from the Bay. The water is polluted from the papermills (PCPs). I also did play on a heavily fertilized and treated lawn from a chemical company for at least 5 years when I was little. I had a thyroid nodule removed, hypothyroidism, and I am still in the testing phase to see if I have a pituitary tumor. My father also has hopothyroid, and seems to have kind of a hump. He has had cancer as well.
I remember the nuclear accident in the 80′s. It was really scary. I remember them saying something like it was worse than what they reported.

This is one of my future quests, I live in a town on 10,000 people and there are many cases of brain and pituitary tumors, I hear it all the time, I know of at least 3 definite pituitary cushing’s cases in my small town. My future goal when I am feeling better is to put my story in the paper, have people call me if they or someone they know has a funtioning pituitary tumor, also brain tumors and brain cancer has some large numbers too. The state sent me a letter I had to fill out when I first found out about my tumor, it was manditory, if I did not fill it out they where going to have my doctor fill it out so I did. So somewhere someone is keeping track of brain tumors in my town. I want to find out the numbers, if it is as bad as I think it is I am going to calll CDC to find out why. I also want to start a support group. But I need to feel better first because this is going to be a big undertaking.

There are many more postings on this topic.

From Wennersten: There’s something in the water

Scientists now tell us there is something in our waters that we least expected.

That “something” is a class of chemicals called endocrine disruptors, and Dr. Vicki Blazer, a fisheries biologist at the United States Geological Survey, thinks the chemicals are responsible for the high concentrations of intersex fish found in the Potomac, and other rivers in the mid-Atlantic.

The chemicals also prove a threat to human health, but a bit of explanation, first.

Our body’s endocrine system is a complex network of glands and hormones that regulate growth, development, and the operation of various organs. The endocrine glands (for example the thyroid, adrenal, pancreas, testes, ovaries and pituitary glands) release hormones that act as chemical messengers and regulate many life functions.

Endocrine disrupters are chemicals that interfere with this system, by either acting like a hormone, or blocking a hormone’s function. They can be natural, but many are man-made such as PCBs, dioxin, DDT and other pesticides, pharmaceuticals and plasticizers. They are found in many products, including plastic bottles, metal food cans, detergents, flame retardants, food, toys, cosmetics and pesticides. They enter the environment and are now commonly found in our streams, rivers, bays and oceans, where scientists are observing problems.

Then Great Lakes Area of Concerns shows a map of problem areas

Forty-three AOCs have been identified: 26 located entirely within the United States; 12 located wholly within Canada; and five that are shared by both countries. Two Canadian AOCs have been delisted and one U.S. AOC has been delisted leaving 30 AOCs remaining on the U.S. side of the border.

RAPs are being developed for each of these AOCs to address impairments to any one of 14 beneficial uses (e.g., restrictions on fish and wildlife consumption, dredging activities, or drinking water consumption) associated with these areas.  USEPA has assigned RAP Liaisons for AOCs.  Sediments have been identified as serious problems in many AOCs. AOC Principles and Guidelines have been finalized for formally delisting these areas as beneficial uses are restored.

What do YOU think?  Are you in one of these areas?

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

What do YOU do to keep participating in your health care and daily life?

This was in today’s online news, about a Cushie having to work two jobs to pay for her treatments.

Kim Yaman works two jobs to help pay for her mounting health care costs. Yaman has Cushing’s Disease, a rare tumor of the pituitary gland.

BY SARAH AVERY – Staff Writer

Galvanized by the difficulties a Cary woman has had paying medical bills despite two jobs and health insurance, a group of more than 60 community activists gathered in Raleigh on Saturday to raise support for a health care reform bill.

The group, all friends of Cary grandmother Kim Yaman, fanned out from downtown Raleigh to knock on doors and give out information about bills being considered in Washington.

A vote in the U.S. House of Representatives was on tap Saturday.

“I guess I’m a rallying point for why we need health care,” Yaman said.

Yaman, whose story was featured last month in The News & Observer as part of a series about health care reform, has Cushing’s Disease, a rare tumor of the pituitary gland. The illness causes weight gain, muscle weakness, high blood pressure and bone loss, among other problems.

For years, Yaman didn’t know what was causing her ill health, but frequent visits to doctors and myriad tests caused escalating medical bills. She took on a second job at the Galaxy Theater in Cary to augment her pay at the Wake County Public School System, but the expenses still mounted, despite insurance.

Last month, Yaman held a demonstration at Sen. Kay Hagan’s office to call for health reform that includes a public option. Yaman and friends handed out Moon Pies to passers-by, because they said they weren’t asking for the moon in seeking reform.

Saturday’s event drew community activists from Seattle, California, New York and Chicago – all who had worked with Yaman last year during the presidential campaigns and were eager to help a cause they hoped would help their friend.
savery@newsobserver.com or 919-829-4882

from http://www.newsobserver.com/news/local_state/story/181016.html

How are you paying or the cost of testing, of surgery or meds? Personally, I don’t have the energy do much more than a part-time job.

Published Date October 2009

Stephanie Smooke Praw¹, Anthony P Heaney^1,2

¹Department of Medicine, ²Department of Neurosurgery, David Geffen School of Medicine at UCLA, Los Angeles, CA, USA

Abstract: Cushing’s disease, due to pituitary adrenocorticotropic hormone (ACTH) hypersecretion, is the most common etiology of spontaneous excess cortisol production. The majority of pituitary tumors causing Cushing’s disease measure <1 cm and the excess morbidity associated with these tumors is mostly due to the effects of elevated, nonsuppressible, ACTH levels leading to adrenal steroid hypersecretion. Elevated circulating cortisol levels lead to abnormal fat deposition, hypertension, diabetes, coronary artery disease, osteoporosis, muscle weakness and psychological disturbances. At experienced centers, initial surgical remission rate via transnasal, transphenoidal resection approaches 80% for tumors less than 1 cm, but may be as low as 30% for larger lesions and long-term recurrence in all groups approaches 25%. Residual disease may be managed with more radical surgery, pituitary-directed radiation, bilateral adrenalectomy, or medical therapy. This paper addresses current and novel therapies in various stages of development for Cushing’s disease.

Keywords: Cushing’s disease, treatment, pasireotide, PPAR-γ, 11 β-hydroxysteroid dehydrogenase inhibitors, dopamine agonists

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Cushing’s Help Founder, MaryO

“MaryO”, Mary O’Connor is the founder and webmaster for Cushings-Help.com and related sites. She is also a Piano Teacher and web designer in northern Virginia. She started having Cushing’s symptoms in early 1983 and finally had pituitary surgery at the NIH in November, 1987, Mary is a 25+ year survivor of Cushing’s Disease.

Due to her Cushing’s experiences and the lack of websites for people with Cushing’s, Mary founded the Cushings-Help website in 2000 to help others who were dealing with the rigors of testing and surgery.

MaryO, as she is fondly called by the members of the support board she runs in conjunction with the website, has been instrumental in educating thousands of people about Cushing’s. Through the use of her website and support boards, these same folks have been able to garner support and information invaluable to their diagnosis and treatment.

Mary is a survivor. Not only has she survived, but she has enabled so many others of us to survive, also.

She has been recognized in Forbes Magazine, many newspaper and journal articles, and is a speaker at Cushing’s Awareness events. She is married to Tom and has a grown son, Michael.

Intro: Hello, I have with us today Mary O’Connor, founder of the cushings dash help dot com website. Mary is a 20 plus year survivor of Cushing’s Disease. For those who do not know what Cushing’s Disease is, you may want to peruse the Cushings-help website. Briefly, it is an endocrine-related disease caused by a pituitary tumor (also called an adenoma) which causes life-threatening symptoms. Cushing’s Syndrome is a similar disease caused by an adrenal or other tumor.

MaryO, as she is fondly called by the members of the support board she runs in conjunction with the website, has been instrumental in educating thousands of people about Cushing’s. Through the use of her website and support boards, these same folks have been able to garner support and information invaluable to their diagnosis and treatment. She has been recognized in Forbes Magazine, many newspaper and journal articles, and is a speaker at Cushing’s Awareness events. She is married to Tom and has a grown son, Michael.

Mary, I know the listeners would love to hear your story. What can you tell us about your symptoms, diagnosis, and treatment with Cushing’s?

Other Topics Discussed:

• Why did you decide to start the cushings-help website?
• What are some of the things that can be found on the site?
• What are the message boards?
• How many members are there on the boards?
• How much work is involved in keeping up the site and the boards?
• How are you doing now? What has happened since your surgery for Cushing’s?

Closing: As you can see, Mary is a survivor. Not only has she survived, but she has enabled so many others of us to survive, also. Please stay tuned for more stories from these survivors! For more information, visit the cushings-help website.

Keywords: adenoma, adrenal, arginine, arthritis, aspirin, awareness, cortef, cortisone, cortrosyn, Cushing’s, diagnosis, endocrine, energy, Forbes Magazine, gland, growth hormone, gym, insurance, kidney cancer, MaryO, menopause, migraine, nap, NIH, obesity, pituitary, Power Surge, rare, renal cell carcinoma, staticnrg, steroid, stimulation, support board, surgery, survivor, symptoms, thyroid, tired, transphenoidal hyposection, treatment, tumor, website, weight, Weight Watchers

Read Mary’s bio.
Listen to MaryO’s Archived Interview from January 3, 2008