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It is December 2006, I am at the lab for a blood test, a different lab than I usually go to. Of course there is a long wait and in the chair next to me is the Readers Digest with an article that reads “Misdiagnosed”. I started reading and before I finished a couple pages I thought, “Oh my Gosh this is me !!!!!” I took it home for my husband to read and he agreed.
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With Cushing's |
Post Operation |
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Jump back 9 years. I first noticed my legs weakening, my ankles were swollen and slowly gaining weight. I was always active but didn’t have a regular exercise routine. Over the next 3 years I kept gaining a lot of weight. No matter what I ate or what exercise program I joined the scale kept going up. In 2001 I was hospitalized for a blood clot in my leg. There were no medical reasons for this so I just thought it was from the new desk job I had gotten 3 months earlier, and was now sitting all day. By this time I was my heaviest, I was weak all over, a pot belly, my face was big and round, a lump on my neck, swollen ankles and my skin was so tight that I was uncomfortable all the time.
With me feeling so bad physically and looking so bad I was embarrassed to go anywhere. I was embarrassed of myself. I thought all of these problems were just coming on from not taking care of myself and being under a lot of stress. In these same years my husband and I became empty nesters, my son went to Iraq, I planned both of my daughters weddings, and lost my first grandchild, a boy, who passed away the day after he was born and my daughter was ill for months. As a mom of course our kids and family come first.
In May 2005 a routine mammogram showed a tumor. Surgery, a lumpectomy, was done right away with some lymph nodes taken. Radiation followed and I now realize why the radiation hit me so hard. I went back to work right away and was doing fairly well. But my doctors keep telling me I was pre-diabetic and I should watch my sugar intake. Well I love to bake and I bake all the time for everyone. But I didn’t get to eat any because I have watched my sugar intake for years because I was trying to lose weight. But it still hit me hard when the doctor told me I have diabetes and I need to take insulin. I went to the classes and read all the books and was trying very hard to lose weight and beat this. The numbers just got worse and the doctor just kept upping the medications. At this time I was on 8 different meds and 2 different injections.
And then it all came together reading that article in late 2006. This had to be it. I never dreamed it could all be connected. Of course I went home and checked out everything on the web that I could. In January 2007 I had my next check up with my endocrinologist. With Cushing’s article in hand, I told the doctor about it and I asked to be tested and he said, “No, you’re not fat enough. Just lose weight and you’ll feel better.” I was now at 272, how big did I have to be to get a simple test? My sister recommended another endocrinologist 80 miles north of us near Buffalo, NY. Dr. Spinaris, DO, not only got me on the right track with my diabetes, she would of course run the test for Cushing. I was busy planning my dad’s 75th surprise birthday party when I got the call from the doctor’s office saying that the first urine test showed very high numbers and of course I would need more testing. I was shocked and in disbelief, this could really be it. This group of doctors was really great! Now I would begin the many months of testing and they would keep me well informed by phone or email. The six months of testing felt like forever; decide the test schedule, then get the results, and then decide what tests to do next.
Then it was finally confirmed - It’s Cushings! My friend Cush (or I should say enemy) has been with me for 9 years. It explains a lot.
Now I needed an experienced neurosurgeon. I live in western NY, south of Buffalo. My doctors in Buffalo were going to check and see if there were any experienced surgeons in the area. We already knew I could go to Cleveland Clinic 4 hours west or Boston 8 hours east. I did want to stay as close as I could. My doctor in Buffalo had found a surgeon up there and made an appointment. I also called a group in Rochester NY. I asked if any had experience in pituitary surgery, she said yes we have a Cushing’s clinic here that was started a few years ago. I said sign me up! They just happened to have a cancellation in two weeks. My mom rode with me on the 2 hour drive. I had read so much about Cushing’s since that first article I found. So many different stories - none of them the same. I did not know what to expect. The team walked in, Dr. Vates the surgeon, Dr. Calvi the Endocrinoloist and others with them. They had already seen my records and the films. They told me of the clinic and where each had practiced before they had come here. Dr. Vates explained the procedure of the surgery and the recovery. Then he left me to Dr. Calvi who explained Cushing’s and all of the possible symptoms. With all my meetings with so many doctors (and you can see there have been too many to count) this team put me at ease right away. I quickly asked, “How soon can I have surgery?” There were more tests that had to be done first. The doctor wanted to locate the exact spot of the tumor before surgery.
When I left the office I was shaking and still in disbelief, someone finally believes me! Someone knows exactly what I have been going through!! Someone really knows I am not crazy. This was September and both my daughters were expecting babies. One was coming in November and one in December. I wanted to at least have the surgery before they were born so I would be on my way to recovery. I was to have surgery on October 24th and all the plans were set, my husband was taking time off work, my sister from LA was flying in, and my parents and family would be there. But 2 days before, I was busy getting everything done at home. While finishing up the fall gardening I stepped on some garden shears that went right thru the side of my sneaker. Not a good thing when you’re a diabetic and not a good thing 2 days before major surgery. Thank God my neighbor heard my screams and rushed me to the ER. A lot more screams and 12 stitches later I was back home. The next day when I called the doctor’s office I got the discouraging news that they would postpone it until Nov 8th, I was so mad at myself.
On Nov 1st, our 2nd granddaughter, Emily, was born. I had some wonderful joy before my surgery. Nov 8th my husband and I were was at Strong Memorial Hospital in Rochester N.Y. I was prepared and ready for surgery. He would be doing a transsphenoidal procedure to get to the pituitary tumor. Dr. Vates came in right before surgery and explained to us that the films had not shown the exact location of the tumor. He explained that if he can’t find it, then it means the gland may have to go, so he would take half the pituitary and take tests in the morning to see if the numbers where lower. If not the next week he would go back in and take the other half. That didn’t sound too great, 2 surgeries in 2 weeks. But I didn’t think twice at that point, just do whatever it takes and get it over with. All I remember next is waking and seeing my husband there. I said, “Did he get it?” He said, “HE Got IT!” I just smiled, closed my eyes and went back to sleep thinking I love that doctor. My surgery did take longer then most, come to find out the tumor was hidden in a crevice. That is why it was not seen even on the best MRI. The next morning, with my family around me, Dr. Vates came in and was smiling as much as we were. My cortisol level was already down. He would again tell me to expect to feel like “garbage” for months to come. And how did I feel? Well, like I just had major surgery. The Endocrinologist got me all set on my diabetes meds and the hydrocortisone. She explained how I was to slowly get off that and all the different stages I may be going thru. Thanks to the pain meds, the headaches were kept to a minimum. They went away after 2 months. Having no energy I just sat around all day. But I did have enough energy to see my third granddaughter, Cheyenne, be born on Nov 30th. She was 3 weeks early and a little peanut weighing in at 5 lbs.
The holidays are my favorite time of year, I always start decorating at Thanksgiving. And the shopping and baking and get-togethers don’t end until after New Years. It was very hard for me to get used to not doing everything. Trying to decide what is most important. Thank God for ordering toys on the web, I still had to spoil those grandkids. My husband actually did more holiday decorating than I did. It was very hard not to let it bother me. But I was just happy and blessed to be with my family and the new babies and know I am on my way to health and be able to really enjoy the next holidays. The recovery from the surgery was not as bad as anticipated but I did not expect the headaches to last 7 weeks. Finally, I was taking less pain meds. Recovery from Cushing’s takes longer and I had many different stages. No energy but not sleepy. I didn’t feel like quilting or scrapbooking, not even reading. All these things I thought I would be able to do as long as I was off work. I couldn’t drive so my family would bring me food or take me out to dinner. The second month after surgery when I started going off the hydrocortisone, my muscles ached like they never had before. Very painful and I couldn’t sleep, every time I would rollover I would be in more pain. But there were good signs, my shortness of breath was gone already. I started to see little dimples in my cheek. It was it really happening, I was losing weight and already had a normal appetite. I didn’t realize how bad it controlled my eating. I wasn’t hungry all the time and I could stop when I was full. I went for my 2 month check-up, when I told the doctors how badly my muscles ached they smiled and said, “Good that means you’re healing.” I started physical therapy to strengthen my muscles.
Today nine months post-op I am 80 lbs lighter. My hair, skin and nails are healthy. I now have ankles. My sugar is staying under control and I may be off all the diabetes meds within a few months. My muscles are still sore and weak but at least now when I am exercising I know I am making myself stronger and healthier. I am still in amazement how such a small gland can cause so much destruction. I am so blessed to get my health back. I can enjoy life and be able to keep up with my granddaughters. The one thing that I have learned is you must be your own health advocate! Don’t let any doctors tell you ‘it is all in your head’ or ‘just lose weight and you will feel better’.
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