Tuesday, March 6, 2012

Missing in action... the cancer scare

First off: I apologize for not blogging as much. It's important to me that with what energy I do have ... I spend it with my husband and my son. So when I come home from work the cell phone is off and if I do go online it's brief unless Elliot is in some sort of a deep sleep.

Secondly... this is a long entry about an ovarian and thyroid cancer scare. I don't have either but below is a detailed account of trying to figure this out.

So here we go...
Elliot was born on 11-7-11 and I had my first period 12-27-11 and it wasn't bad at all. I didn't bleed much post partum because he was a c-section (AWESOME!)

I went back to work on January 23rd and my period started on the 22nd. The first two weeks of work were really hard. Whild I loved being with my students I ached (literallly) for Elliot and would count down until it was time to see him.

After about two weeks I noticed that the bleeding was not letting up and it was scaring me so I talked to my OB about it and she said it could very well be a post partum response to being away from Elliot for the first time. ((Note, everything that goes on after you have a baby is labeled post partum)). I told her the birth control pill wasn't stopping the bleeding and nothing was working and she suggested I come in and see her so I made an appointment for my 30th birthay (because seriously she is awesome so it didn't bother me). She ordered some labs for me and wanted to rule out ovarian cancer and any thyroid issues. Ironically, my bleeding stopped on the 23rd and my appointment was on the 24th. My labs were all sorts of fucked up and long story short we ruled out ovarian cancer but really started worrying about the thyroid.

My thyroid has always been a source of problem for me since being diagnosed with hypothyroidism and I'm at the point where I believe I have more thyorid issues than pcos issues. My levels came back as off the charts and I was officially labeled as being in thyroid crisis and since ovarian cancer was ruled out we went on investigating the thyroid. I had an ultrasound done and set an appointment to meet with the endocrinologist. I met with him today. My new labs came back now that I'm on a new dosage of meds and I'm still in crisis but my number is now 16 point something which is lower than what it was... but still bad. A healthy number is anything under 5 but for a woman with PCOS anything under 3 is good and if you're trying to have a baby anything under 2 is where you need to be.

While meeting with the "new guy" I told him everything that was going on with me and how I don't feel it is post partum depression and how I knew things were going wrong when my milk supply went dry, etc... we talked about my pregnancy and he kept telling me I had to be wrong when I told him that I actually had my thyroid meds bumped DOWN instead of up. I explained to him how while pregnant I lost weight and never technically "gained" any weight during the pregnancy. I told him I'd sign my life away for him to see all of my records and I insisted that I was 100000000% sure of what happened during my pregnancy. I explained that I felt the healthiest ever in my life when I was pregnant. I explained that I'm frustrated with my weight gain and knowing my thyroid is off.

He asked how I know it is off besides the labs and I explained that I have the classic symptoms of ice cold hands and feet, dry skin, dandruff, weight issues, fatigue, etc...but the reason I was there to see him is because of the month long bleed. I explained that in the past when my thyroid was acting up I had the opposite issue where I didn't bleed and could go months on end without a cycle. At that point I saw him write down the numbers "278" which is the code for obesity and I told him flat out he can't do this to me that he has to listen to me and trust that I know my body and not chalk it up to me being obese considering I'm not, nor do I aspire to be, the 130lbs some random asshat in the world decided I should be. I told him that I feel weight charts are complete shit because if you are 20lbs over weight you are automatically obese and if you are 30lbs over weight it's morbid. I asked him about possibilities for what could have caused this to happen because we really suspected cancer and according to my ultrasound it is not cancer.


Apparently, my thyroid is not anatomically correct, like it is the right shape but not the right dimensions - its hard to explain. And it's lower in my throat and if they were to remove it it would be an incredibly risky surgery because ...one wrong snip and I could be dead so removal isn't an option. It is a bit enlarged right now but no nodules and its not as large this week as it was last week on the ultrasound which means that the new meds are working but I don't feel it working.

I do feel a bit more energy but no where like where I need it to be and the problem is getting an accurate lab read so what we are doing is waiting 4-5 more weeks and I'm going to go in and have fresh blood drawn. He wants the blood immed...iately tested then and there in front of his face to get a true reading of where I am and he is going to run some other thyroid function tests. In the meantime he mentioned some unconventional methods I could try to help my thyroid such as "starving" it one day a week to boost it's function and a few other things. One thing I did learn is I need to watch myself with my almond milk and calcium. I shouldn't have any milk/almond milk within 4 hours of taking my medication.

We had a lot of good discussion and he was looking to get a team to investigate my case but at the time of the appointment nothing was confirmed. Later today I got a call saying my RE (Dr. P) is on board on the "panel" which will be meeti...ng later on this month to discuss my issues. I explained that I know it looks like I'm just an overweight new mother trying to keep up with work and family but it's not.... I know my body and something is just not right. I'm tired, the weight issues, my nails are brittle, my feet are cold, etc.... We're trying to figure out if my thyroid is attacking my parathyroid or if my body is building an immunity to the "therapy" ((highly unlikely)) or if my body is simply just being whacky post baby.

I'm thrilled to know it's not cancer, I am. But I can't believe this is so hard to figure out. We know it's the thyroid, we know that... but we're not sure what specifically is happening. I'm not vitamin deficient, I'm not anemic, I'm not having a cyst rupture, I don't have mono, I don't have HIV, etc... it's just BIZARRE. So right now the plan is to stay on this dosage and to try to "starve" it one day a week and possibly do a "fast" to trick it. I just hope we can figure things out. In the meantime I'm going to be re-reading my "Living well with hypothyroidism" book and any other information I can get my hands on. He said I'm definitely an interesting case, hence the panel. When the nurse called me this afternoon about the panel being confirmed she said, "Your doctor in WR speaks very highly of you and your medical self awareness" I said, "Yes..." She said, "I know you probably have doubts with Dr. M but I assure you he is a good doctor and he will figure this out."

I think besides all of this going on with the thyroid I also know that come April I will be given a timeline as to when I would like to have baby number two and that's an overwhelming thought right now. I know for a fact it is to be discussed at my July appointment with Dr. P. I LOVE being Elliot's mommy and I would love for him to have a brother or sister but when I think about that... when I think about TTC... I get scared because while the fight was totally worth it... I don't think I could ever handle that kind of pain again and I don't want it to take from my time of being Elliot's mommy. It's hard to explain. I want to enjoy my son and not focus on making another baby but I also know the timeline is coming. I'm no fool. My body is doing exactly what I knew it would do "post partum" thanks to the thyroid AND the PCOS. I feel like I'm racing against the clock. And I also know that if you've never had pcos or thyroid issues you're never going to relate to this.

2 comments:

Pam said...

You're right, it's hard for someone with PCOS to understand, but I read through it twice and I think I get it a little more. I think you're thinking is completely legit. You should still concentrate on being his Mommy. What's the harm in waiting to TTC another year or so with Dr. P? Is he rushing you because of your history?

Faithful Leigh said...

I don't feel that Dr. P is rushing me but I know in time age is going to be a factor (or so they say) and I'm officially "30"... ideally, I'd like Elliot to be potty trained and in preschool (age 3 is the goal) before having another baby. But in reality, God's in control.

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