Thursday, June 5, 2008
01/06/08-----pregnant :) thrilled. tired.
06/11/08-----6 months pregnant. Feeling great!
10/01/08-----due date, but doctor said it is more likely mid September (go Virgos!)
Jonathan and I are happy to announce that we are expecting a baby girl this fall!
Photos of mama, taken Memorial Day weekend 2008
And if you've read along so far, you must have noticed that nothing with Cushing's is easy. Well, the medical community believes that pregnancy with Cushing's is impossible at the most, improbable in the least.
We are happy to have defied the odds.
Many women who suspect they may have Cushing's have expressed keen interest in my sharing what we learned from speaking to all of the specialists. I share my thoughts here to benefit these women and their families. For this reason, I outline our decision process for postponing pituitary surgery to try for this baby below.
This is another way that patients with Cyclical Cushing's differ from those with Florid, or full blown, Cushing's.
Why I chose to become pregnant before surgery
When we decided to try to become pregnant at the end of 2007, it was quite a controversial decision. Every person seemed to fall on one of two sides: have a baby or go for pituitary surgery. Jonathan and I had to decide what was right for us, what we could live with. We are overjoyed with our decision.
December 22, 2007
Jonathan and I visited with my San Antonio neurosurgeon and endocrinologist this week. My endo said that I have very early Cushing's disease. On a scale of 1 to 10, with 10 being full blown Cushing's, she says I am a 3. Luckily, I do not suffer from the long-term damage of high cortisol such as diabetes, osteoporosis, kidney stones, or unusual infections. We really feel like we caught this early, and unlike every other disease you heard of before, apparently, it is not so good to catch Cushing's disease early. Doctors don't know what to do with you.
I have had two endocrinologists in the last month tell me that Cushing's disease is the most difficult diagnosis to make in the field of endocrinology, if not all of medicine. Leave it to me to be so extraordinary.
My neurosurgeon has an opening next Thursday, 12/27 and he is ready to perform surgery. I would be in the hospital for 2-5 days for the pituitary surgery. He would access the pituitary, located behind the eye sockets, through my nose. He must first drill a small hole in the bony casing around the pituitary to gain access to the gland.
There it is. Surgery. Just dangling out there for me to reach out and grab.
However, I just can't do it now. Jonathan and I have discussed this topic ad infinitum over the past few months. We want to try to have a baby first, before pituitary surgery.
No doctor can make any guarantees that there will not be damage to my pituitary gland after surgery. No doctor can guarantee that we will be able to have a baby naturally after surgery. The pituitary gland makes luteinizing hormone (LH) and follicle-stimulating hormone (FSH), both critical hormones that lead to ovulation. No ovulation, no baby. At least not one for thousands of dollars. After all this medical treatment, we will not have a lot of dollars left over.
So, we feel that we want to try to have a baby on our own now, while I am still early with this disease. I have met with a high risk obstetrician and reproductive endocrinologist who can help me. I have a lot of faith in these doctors, and I just feel like it will all work out for the best.
Yes, there are dangers to my health: high blood pressure, gestational diabetes, pre-term delivery, pre-eclampsia or high blood pressure, swelling. I may have to go on bed rest. Do these sound familiar? I bet you know many women who have gone on to successful pregnancies with these issues. I hope to be one of them too.
My doctors feel that with medication that is safe during pregnancy, we can handle any of the symptoms that Cushing's caused in order to reduce my risks to that of any other 35 year old woman. We can only monitor my progress and see how I do. Some people have normal pregnancies and face problems at delivery. Some people have rougher pregnancies but smoother deliveries. NO ONE KNOWS WHAT WILL HAPPEN.
There is not enough research to say what to do one way or the other. This disease is so rare that the answers I seek do not exist. Cushing’s disease and pregnancy is so rare that an extensive review of the medical literature brings up articles containing 20 subjects, 10 subjects, 4 subjects, and even a case study of one woman. These pregnancies had varying success. All I knew is that there was not enough data, not enough participants to know what would happen. My neuroendocrinologist reminded me anyway that when these articles discuss pregnancy, they are talking about florid Cushing’s patients, not cyclical Cushing’s patients. So, even less data out there.
If I were to go into surgery now, I would need someone to monitor me 24-7 for several months, likely 2-3 minimum. Someone must watch me as my hormones regulate and normalize. This can be a very dangerous time. There is no one who can do that for me now, as we live far away from Houston, and people have other obligations. They can not be gone that long from their lives to help me with mine. In addition, it is not likely I will be cured with one surgery. I have been watching Cushing’s patients get surgery all year long, and I know what they go through by what they post. Cyclical Cushing’s patients often need two pituitary surgeries—6 to 12 months apart—and then possibly a bilateral adrenalectomy several months after that. By the time I am finished with Cushing’s surgeries, it could be 2 to 3 years from now. I will be 38. While there are hormones they can inject me with to help with ovulation, my eggs will be older, and baby will be at risk for genetic defects and chromosomal abnormalities. Plus it is harder for an older woman to carry a baby, even if many do so successfully. It is riskier. If it works, that is great. That is a good option for a second or third child. If it doesn’t, everyone who counseled me against the baby will go on with their lives (usually with babies of their own) and they will forget about me and my loss. Well, I feel strongly that I need to take a calculated risk now and see what we can do. Many Cushing’s patients on the boards admit that they have had Cushing’s for a very long time (5-15 years in most cases), and many have had successful pregnancies. I am confident that I can, too.
I will have to wait 6 months after delivery for my pituitary to stop its swelling from pregnancy--this happens to all pregnant women. Then I can have another pituitary MRI and then pituitary surgery. That means it will be another 15 months before surgery can happen, at the earliest. It is a little scary to think that it won't be before March 2009, but I will go forward hopefully with a baby in my arms. However, all I can say is that it is really what I feel I should do, and I feel driven by a very strong voice inside me that says I should go ahead and try. I can see all of it very clearly in my mind, and in my mind, it is all going to work out fine.
I thank you all for visiting this page and checking in on me. It warms my heart to know that so many are watching out for me. I will keep you updated.
Cushie Gracie in Ohio writes:
“Congrats on the decision to try again! You never know until you try. This way, you won't have regrets later, thinking you should have tried."
Thanks Gracie. That's the most important part of this decision, and you understood that point without me having to make it. At any time, I can turn and go to surgery. ANY TIME. I am cleared by two neurosurgeons, and they are ready to go any time I am ready. I can go next Thursday if I want. However, I just feel that since my Cushing’s is so early, I have time to try. If it doesn't work, then at least I tried, and at least I have no regrets. I will not wonder what could have been.
I can go to pituitary surgery any time I want. However, the reverse is not true.
If I choose surgery first, then I will never have an untouched pristine pituitary gland again. That has has consequences for my fertility. I do not want to spend the next 12-24 months after surgery #1 (maybe 2 and 3) wondering about my fertility. I don't want to be the woman I know I will become in that scenario – sullen, remorseful, guilty, heart broken. It is just really best for me to try and see. Also, adoption is not a viable option, as most agencies do not allow parents adopt if they have had major surgery in the past 10 years.
I have some friends on an email list and someone told them about my decision. Someone expressed concern about my decision saying I already had so much on my plate that I cancelled the wedding. Another person (both male) agreed. Granted, neither of these people have been following my case or reading my carepage regularly, where I explain everything about what I am doing, how I am approaching it, how many doctors I have seen to decide this or to get to where we are now. My response: "When you have a brain tumor, you get to decide. Until then, I get to."
I want people to give me credit for being the type of person who leaves no stone unturned, who is sure of her decisions only after hours and days of contemplation and research, or even a little bit of recognition that every decision I made about this disease so far has been right on the money when others doubted me: setting up proper insurance before my first endocrinologist, traveling to Seattle on a gut feeling in pursuit of high numbers, working doctors in three cities against each other and getting every lab order I needed to get a diagnosis in 9 months, working to understand everything there is to know about pregnancy and Cushing's and high cortisol, and wading through so many medical journal articles that I could write them myself.
Am I perturbed when people then question my judgement? You bet. I am upset by it for not getting the credit I deserve, but I must get over that. How do I do that exactly?!
Maybe I will train my mind that nothing in life is for sure. Life gives no certainly to anyone—sick or not. People often go through life oblivious to this uncertainty and denying what could happen at any turn.
Instead, it is best to think that we all move through life based on a set of calculated risks in an attempt to get as much as we want from this life that we can reasonably attain. Yes, I like that much better. I am doing just that.
People do not have to agree, and they can go on and make their own decisions. Perhaps I will hide in the background and pop up at that person’s time of trouble and uncertainty and tell them their decision is bad so they can worry over their difficult decision even more than they already are. No,I won’t. Even though I can, I never would. I will use my powers for good, not evil. Even for people who don’t extend that to me.
As of now, I am releasing this negativity from people who have never studied Cushing's, never sent me a card, never given me a call, much less sent over a casserole. I am releasing other people’s opinions into the air like a balloon that carries away my anxiety and fear of all the uncertainty we will face. Yes, today, I release all of that. Thanks to all of you for reading. Love, Melissa
Cushie Jeremie in North Carolina writes in.
She was diagnosed with Cushing's disease in August 2007, and she had her first pituitary surgery on September 6, 2007. She has two boys, Braden 6 and Cooper 3. She and I have become good friends. I received this email from her this morning.
"Melissa, I feel for you. At my follow-up appointment, the Cushing's doctor just told me yesterday that a part of my posterior (fertility area) pituitary was removed during surgery, and I may have to do fancy fertility stuff to get pregnant. She said I should be having a menstrual cycle by now (3 months post op), and the fact that I'm not means that I may have lost function permanantly. She said I may never get back this part of my pituitary function.
If we were trying for our first child, I would be freaking out. If I were in your shoes, I would do the same thing. Good choice not to have surgery and to try for a baby first! It is still early in Cushing's for you.
You know, I am confident that I had Cushing's when I had Cooper, my second child. I didn't lose any weight after birth. I gained weight in the hospital. Everything went haywire from there, and I started getting all the symptoms that I now know are due to Cushing's. That was 3.5 years ago and here I am, three months post op. You know that there are lots of women on the boards who just know they had Cushing's while pregnant. Many went on to successful pregnancies.
We are thinking of trying for a third. I will take your advice and work with a reproductive endocrinologist for help."
I am very sensitive to anyone thinking I am pessimistic about my situation. Understand that Cushing's disease causes depression and anxiety which leads isolation and muddled-thinking (I'm sure I've posted about somewhere on this blog).
I am committed to fighting and getting through this, for both myself, my husband, and my family.
Sometimes I'm amazed when I look in the mirror and wonder who that person is. Even as I try very hard to be forgiving and accepting of my condition, it is difficult when the main symptom of weight gain is so easily criticized by our society.
I have never been bound by what I could not do before.
Now, with this disease, I feel I am.
I am uncomfortable in this skin.
It doesn't fit.
I do not like saying I can't do something on my own.
I do not like saying I need help.
I do not like always wondering if I can.
I miss knowing that I always could.
I try hard not to engage in negative thinking, and most days, I do not. On some days, I feel like my life is in a holding pattern. I am not the same person I once was. I can’t do what I used to be able to do. Some days, I find it difficult to ignore the facts.
1) I can't think like I used to. I am easily confused and overwhelmed.
2) I can't do like I used to. My body aches, I have no stamina, and yet life piles lots of work on me every day. Despite my illness, I feel compelled to keep up with it all.
3) I can't work like I used to. I have no way of knowing how I will feel from day to day. I can't stand longer than 20 to 30 minutes at a time. I can't walk great distances any more. I feel like what's left of a working mind is trapped in a unable body. I feel like my work was interrupted, and I miss feeling purpose in my day. I miss feeling like I am a part of something bigger than me, and I miss my work in politics a great deal.
4) I can't be upbeat like I used to. Pituitary tumors cause depression, isolation, and anxiety. This is when the above problems seem so insurmountable to me. I cry a lot these days.
I have been living with this disease long enough to know to just wait it out. A new day will dawn, and my outlook on life will again turn more favorable.
I don't really like to look behind me too long, so I am going to try to feel the feelings and move on. I feel very protective of myself right now.
Upon quick thought, I am reminded many very good indicators that my life is still quite good:
- I have a husband who loves me and promises to stay at my side. I couldn't ask for anything more.
- We are expecting our first child, and being a mother has always been important to me.
- We recently returned home to Houston to be closer to family. I am happy to have them so near to me.
And on days when I feel like my old self, I prefer to think of this disease as building something in myself that needed to happen…
- perhaps more self-awareness
- perhaps more appreciation
- perhaps more compassion
I hope to get back to a place where I feel like I can accomplish anything I put my mind to. In the mean time, I know I must do my best at the following things:
- I must try to make the most of my situation.
- I must always try to live in the present.
- I have to believe that my life has a greater purpose than what was previously revealed to me.
- I must follow this path to see where it takes me.
- I must remind myself that no one gets any guarantees in this life—health- or otherwise.
- I must continue to build a life that fulfills me while doing good for my fellow citizens of the planet.
I know there are people who have less and need much more.
I have spent my adult life serving as an advocate for them.
However, in order to tell of my triumphs with Cushing's, I must also honestly disclose my struggles. I have no intention of my story ending in a low point. I plan on winning this war and helping others along the way.
Even on my bad days, I know what is possible for me. I know what I have vowed to do.
Even on bad days, I remain undeterred and committed to bringing more awareness to the plight of patients with Cushing's disease.
HOW ARE YOU FEELING THESE DAYS?
I am feeling OK. I am living with my symptoms.
While I spend good days desperately wanting to spend time with old friends, I am quickly reminded on a bad day why my body and mind just don't agree with my sentiment. I end up having to cancel a lot. I end up looking and feeling like a flake. I hate that. So, I have just learned not to make too many plans.
These feelings are also explained by my Cushing's and pituitary tumor. I have low IGF-1 on at least five tests in the past year. What does that mean?
In adults, abnormally low levels of GH and/or IGF-1 may cause subtle, nonspecific symptoms such as:
· Decreased bone density
· Adverse lipid changes
· Reduced exercise tolerance.
My low IGF-1 test results suggest that the symptoms in the below survey are impacting me, too. In my case, my pituitary tumors that are secreting ACTH are also disrupting the normal hormone production patterns of the pituitary. Growth hormone, as I said earlier, is just one of the pituitary hormones.
Growth hormone deficiency in Adults
- I have to struggle to finish things
- I feel like I've got to sleep during the day
- I feel lonely even when I am with other people
- I have to read things several times before they sink in
- It is hard for me to make friends
- It takes a lot of effort for me to do even the simplest jobs
- I have trouble controlling my emotions
- I often lose my train of thought
- I lack confidence
- I've got to push myself to do things
- I often feel very tense
- I feel like I let people down
- I find it hard to mix with people
- I feel exhausted even when I haven't done anything
- There are times when I feel very low
- I avoid any responsibilities
- I avoid socializing with people I don't know well
- I feel like I'm a burden
- I often forget what people say to me
- I find it hard to plan ahead
- I am easily irritated by people
- I often feel too tired to do the things I have to do
- I have to force myself to do everything that has to be done
- I often have to force myself to stay awake
- I have trouble remembering things
Many of you may read this list and say, “That doesn’t sound like the Melissa I know at all.”
Two years ago, I would totally agree.
Now—and for a while now—it all is true for me.
However, I know, that this is not the person I am, just the person I am with Cushing’s disease.
Some days it is hard to tell where one Melissa starts and the other one ends. Those days are the toughest, because in my mind, I think like you… that I am fine. Yet this disease quickly reminds me of my limitations and I remember that the other Melissa seems world’s away now.
At the end of it all, I know that this is my new path in life. And I look forward to helping people along the way, and advocating for better healthcare and Cushing's awareness when I am well again.
Then you will see that Melissa that many of you already know.
That's when I will see more of that Melissa that I ever knew was possible!