Longwood Gardens

 

 We met Mom and Dad in Philadelphia for Memorial Day weekend. (It's about halfway between us.)Although I've been to Philly many times, we did some really different things this time. Our favorite stop was at Longwood Gardens in the suburbs of Philadelphia. 

 

We spent almost 5 hours rambling around the various gardens and the conservatory. The kids really enjoyed the topiary garden, the Italian water garden, and the scented plants that were marked all through the garden. 

Jason was giddy over the vegetable gardens. I thought the perrenial gardens were the best. There were also woodland gardens, annual gardens, and rose gardens. 

We walked until our feet were bloody stumps and then rested and walked some more.

 

Happy Anniversary to me!

Today is my 1 year anniversary! I had pit surgery a year ago today at MDA and my numbers show that I am still cured. Last months am cortisol was 3.3 (6.2 - 19.4) and ACTH was 5.7 (7.2 - 63.3). I am currently on 15 mg and trying really hard to get down to 12.5 mg. I recently started Growth Hormone and am hoping that that will help me with some ongoing problems.

This year has been the hardest of my life. Most of you know I had a number of complications after surgery and spent a lot of time in various hospitals. I know that I am not necessarily the norm, but I want to share the good and the bad about this past year.

The Bad:
I have felt sick and exhausted for most of this year and for a good 6-8 months of it I was nauseated. I haven't been able to take care of my kids the way I would like to. My house has become a messy, messy place. I have only lost 5 pounds. I feel sickly a lot of the time. My muscles are still really weak. The brain fog is still present a lot of the time.

The Good:
However, I do feel like surgery was worthwhile. I find that my mental outlook is greatly improved. I haven't had a single panic attack since surgery. (I was having horrid ones almost every night.) I am less sweaty. I have a clear complexion. My hair isn't oily. My hump is gone. My stretch marks aren't red anymore. I can easily sleep through the night.

This cure isn't exactly what I thought it would be. Of course, in my imagination I saw myself recovering quickly and having all symptoms gone within 6 months. Well, this disease doesn't play fair! I keep believing that things will get better and better and that in the near future I will feel great. I'm hoping that a combination of more weaning and the GH will help me lose weight and feel less foggy.

I will say that I have learned a great deal about myself and learned how truly kind others can be. I am a stronger person than I knew, and I have an ability to be positive even in extreme situations. I have learned how to be patient. (I've had a lot of practice this year.) I've become assertive in getting what I know I need. I have become a mother less concerned in appearances and more concerned with making memories.
I've learned that people want to help you and are truly kind. 

I am a better person because of this past year...

Thank you to all of you who have helped me through this. lifeline to me. Recovery is physically and emotionally hard, and I could not have done this without so many of you.

Thanks for watching my children, cleaning my house, bringing me food, visiting me,sending me cards and email. It was all deeply appreciated.
Love to you all,
Alicia

Are you better yet?

I have had a number of people ask me if I'm "better yet?" The answer to the question is no, but I'm getting there. I think one of the hardest things to explain to people is how long this process is. I'm not just recovering from surgery, I'm also trying to balance every hormone in my body. For those of you who are interested in muddling through my horrible anatomical lessons read on....

I had a 10mm ACTH-producing adenoma in my pituitary gland. This tumor not only made my body make too much cortisol, it also damaged the pituitary surrounding it. I was lucky to have such a fabulous surgeon, and he removed only about 20-30% of my pituitary when the tumor was removed. This is important because the pituitary produces so many hormones and without at least 50% of it, it stops producing those hormones.

This is where it gets more interesting... One would assume that as soon as the tumor was removed, I would get better right away. However, there are two issues. First, my body is used to having high doses of cortisol after so many years of it, so when the tumor was removed I had to take high doses of cortisol (60 mg/day) and slowly wean week by week. I am now down to 17.5 mg/day and try to wean down 2.5 mg/day ever other week. Second, because the tumor was producing ACTH for so many years my pituitary gland stopped producing it--it went to sleep. Only with time and weaning will my pituitary wake up and start producing ACTH on its own.

Weaning is truly the worst. The 3rd through 5th days after decreasing seem to be the worst of the wean. I am freezing cold, nauseated, have piercing headaches, diarrhea, and can't seem to focus or find the words I need. I try to start my wean on a Thursday so that I have the worst of it over the weekend and can rest. Sometimes I can't tough it out and I have to go back up 2.5 mg/day for another week and then try again. Weaning from cortisol has been compared to weaning from heroin. Don't become a heroin addict!

Not only does the pituitary fall asleep and stop producing ACTH, but the trauma to it from the surgery causes it to not function as it should. I am now deficient in growth hormone, thyroid hormone, estrogen, and testosterone. Again, these hormones should come back with time. My thyroid levels are almost good after a few months on synthroid; I'm waiting out the estrogen and testosterone hoping they'll kick back in soon without drugs, and I am trying to get tested for growth hormone to see how much I need to take. (The wheels turn slowly in the medical field!) The effect of these other hormones going away is that I am fatigued, moody, and haven't lost any weight.

The lack of weight loss is concerning because it can mean one of two things: I need growth hormone or Cushing's is back. Growth hormone deficiencies mimic Cushing's weight gain and many people start to lose weight once they start the injections, so I am trying to not worry about it for now. I am currently confident that Cushing's is gone for the following reasons: my monthly blood draws show my morning cortisol numbers to be so low they aren't on the chart, being able to sleep through the night, no panic attacks, buffalo hump is gone, alien skin is gone, and stretch marks aren't red.

In the annoying Cushing's manner, I am in wait and see mode for a while.

So to the question "Are you better yet?": I am able to handle a lot more than I could months ago, I am back at work and able to run the kids around. I can make dinner most nights, and only nap a few times a week. I can read again and actually follow it. I went to a couple of fairs this fall and walked around and lasted all day. I am getting better and I can't wait to answer the question, "Are you better yet?" with a resounding yes.

Camping in the "Wilderness"

Jason decided he wanted to take the boys camping over Labor Day so we drove up to Massachusetts to drop me off at Aunt Kristie's for some girl time.

This being the very populated east coast, there are very few areas to camp that don't involve paying for a small patch of dirt next to 30 RVs and having electricity and running water at your site. Jason wanted to give the boys a "wilderness" experience, but there wasn't anything close, so he and Aunt Kristie hatched up a plan.

Kristie's house backs up to a conservation area in Concord and her own property goes back quite far into the forest, so Jason decided to camp in her backyard! He went out exploring the backyard and found a place on her property where they couldn't see the house at all and then he found a way they could "hike" in.

Kristie, Lacey, and I drove Jason and the boys around Acton and Concord for about 20 minutes and told them they were on the way to their camp area. We dropped them off at a trail head for the Concord Conservation area (about a mile from Kristie's house.) and dropped them off. They hiked in for about an hour and then "found" a great place to camp.
It was great because they could light a fire without a problem on private property, and the boys had no idea they weren't in the forest somewhere.

1st day of school

Here are some pics of the kiddos on their way to the first day of school.
Aidan is starting Kindergarten, Carter 3rd grade, and Keaton just wants to ride on the bus!
My little boys are getting so big!

Happy Father's Day

For those of you who want something more uplifting than medical horror.....feast your eyes on these cuties! I love my boys and they love their dad!

Jason, Thanks for being such a wonderful father and a great example to our little boys. We love you!!!

The Ordeal part 5

I laid like a good little patient on my back for the next 5 days. I watched movies when I felt up to it and slept a lot. (I was having some serious back spasms and was on Valium so I could count on a couple of good naps every day.) My nurses were fabulous, and at St. Raphael's unlike Yale, they give you the same nurses every day they are available. What a wonderful group of nurses! They kept me clean, happy, well-drugged, and snuck my kids in a couple of times to see me. (No one under 12 was allowed on the floor.)

On the 6th day they sat me up about 40 degrees (which to me felt like I was standing up) and gave me a cup and said let's see if you leak....Sadly enough.. I did. One of the Neuro PA's took the cup and things started rolling for another surgery. This time a CSF (Cerebral Spinal Fluid) Revision. My darling nurse Brittany came and sat with me while I cried a little bit, and she got teary, and then said, "Well, at least we get you for longer."

In some ways I was lucky because the best ENT was available that day and wasn't for the rest of the week. The other good thing was that as soon as my nurses heard I would be around for quite a while longer, they switched my room to one that had a TV in good repair. Sounds lame, but every little thing is exciting when you are on bed rest.

I called my mom and Jason and both sounded pretty dejected and resigned. Jason rearranged patients for the rest of the afternoon and he and my mom came over to be with me while everything was prepped for a 2:00 surgery. As we were told the problem with a revision is that the surgeon never really know what the prior one did and they don't like going into an unknown.
This neurosurgical group decided that they wanted as much of a visual field as possible so they decided they would cut the skin right under my nose and peel the skin back so they could see a lot more. Pretty gross, but they thought they would have better luck that way.

Around 2:00 I was wheeled back into the surgical waiting room. My mom and Jason were able to stay there with me right up to surgery time. We were all a little weepy at having to do this again. Jason was promised that this time someone would come and talk to him about the surgery immediately following the surgery. They gave him a 4 hour time frame. I was anxious about the CSF headaches coming back, but otherwise in as good of shape as possible.

I was wheeled into the ER and the ENT came in and put on "Phantom of the Opera" and was singing along to it. I told him that was my least favorite musical ever. He chuckled and said if I could sing to it he would change it. So I sang right along with him and he asked me what musical I preferred. I told him "The Fantastiks" and I fell asleep to "Try to Remember." Much better.

I woke up briefly in a CT room. Apparently my pulse had dropped very low unexpectedly during surgery and they were checking for blood clots. The next thing I remember was waking up in my room in the ICU with my nurse Brittany and Jason. My nose was packed and oozing and I had a whopper of a headache, but the surgeon came in and said everything looked OK. They found a secondary leak to the one I originally had and so to fix everything they took a piece of my septum and wedged it in between 2 pieces of cartilage, took a piece of fat, some duraseal (basically surgical glue) another piece of fat, and more duraseal and packed my sphynoid sinus completely. I am told I will never miss the back of my septum and I can't say I have to this point. I was still plugged up to the drain and would be flat for another 5 days.

Pain management was much better this time around. when I wasn't getting a lot of relief from Morphine they had me take Percocet and that helped immensely. The next 5 days passed as slowly as the previous 5, but adding in the pain medication I slept a lot more.

The ICU became fairly homey in its way. These are the things I will remember about my various stays. Someone is always up, the respirators make sounds like someone is playing the oboe, tiny taps of people walking quickly up and down the halls, that darn curtain being thrown open so someone can come in to take more blood, check your levels, or answer your call light, quiet conversations, gentle nurses hands, and wanting to go home so badly.

5 days after surgery I had my nasal packing removed. I have been told by many a friend and relative whose noses have been broken that this is the worst experience ever. I demanded that I be doped up before they did it. The on call ENT said, "I don't really hear complaints about it." I asked her if she had ever had it done. She admitted she had not, so I said, "I'll wait for some drugs." My darling nurse Cindy gave me some morphine through my IV and we waited a few minutes and then had the packing pulled. I'm so glad I wasn't all the way "with it" for that. Pretty horrid.

6 days after surgery, I was sat up again to watch for leaks. I was petrified I would leak again. But we waited and waited and the day passed with everyone watching and waiting. On the 7 day, the Neurosurgeon decided we were successful and in a highly anti climatic moment they pulled out the drain. Of course, they then told me I had to stay on my back for the rest of the day to keep pressure on the drain site! I stayed in the ICU for one more day as they monitored and got me up to walk (that was fun!) and then I was transferred to the regular floor for one day to irritate me!

I'll post about my homecoming next, but the medical saga for now is over. I'm hopeful we don't have any more adventure for a long time coming. Recovery is slow and frustrating for someone who wants to run a million miles an hour in every direction, but I am trying to pace myself, and when I don't, my body does it for me.

People keep asking me if I would do it again, knowing this all would happen. Of course I would. What choice did I have? I could live with a disease that slowly killed me or I could be brave enough to jump at a chance to live my life in a healthy body. I took my chance, and it wasn't the easiest course, but it is still my first best chance. My Aunt Kristie told me that one of my Grandpa's favorite things to say was, "When I get something, I really get it!" I am his granddaughter after all!