July is crazy...crazy good!

I love summertime but it is so busy!  I've had a great month full of family, good news, a lot of traveling and camping and trying to play catch up 24/7!  I'm hoping the end of this month will end as good as it started!  I got back from camping late last night and I am going in for blood work probably tomorrow!  I'm quite anxious to see what my prolactin has done since I've successfully weaned Tux :)  I haven't nursed for about 3 weeks now, and my milk has reduced dramatically!  (Thank goodness, I didn't think it would ever happen.)  Since Prolactinoma is directly connected to milk production I'm guessing this means my prolactin is decreasing rapidly!  Since my tumor has been shrinking with my decreasing prolactin levels I will continue to hope that my tumor is shrinking by the minute!  It is so easy to be optimistic in the summertime!  I just looked back over this post and realized I have put an exclamation mark after each sentence :)  or a smiley face....ha ha, it's gonna be a good day!

How can I not be optimistic with this little man with me all the time!  This month he truly experienced the joys of being all boy!!!  The pink water bottle is mine :)  His is green with dinosaurs, I promise!  He loves dirt and mud, bugs and sticks...frogs and snails and puppy dog tail...that's what little boys are made of!

Dr. Appt in a nutshell!

I don't have much time, so this is the nutshell version...I went to the doc today.  My tumor actually has shrunk from 12mm to 10mm since my last MRI.  My doc appreciated me filling him in, neatly skirted the fact that I've been using essential oils, told me that I was on the right track with my shrinking tumor and lowering prolactin levels and referred me to an endocrinologist in town that is "conservative, anti-surgery and open-minded"!  ha ha!  I will scan my MRI results in when I have more time, but that is pretty much what he said.  He didn't think there was any need for me to go on any Rx's right now, but I need to have more blood tests in a month and we would reevaluate in a month.  He said he thinks my levels will decrease dramatically now that I am no longer nursing!  So, I have an appt w/ a "conservative, anti-surgery and open-minded" endo in about a month. Keep posted...more to come!

Timeline.....

Just for reference I am going to do a quick and dirty timeline so that I and anyone that may read this can see and maybe give some input on my situation.....

March 2008 - diagnosed w/ 7mm prolactinoma due to infertility.  Prolactin at 70.  Started on Bromo and Clomid.

April 2008 - Pregnant and went off meds.

June 2008 - miscarried and had a D&C.  Went back on Bromo and Clomid.

Nov. 2008 - Pregnant

Aug. 2009 - Had a beautiful bouncing baby boy!  Nursing and on zero meds.

Beginning of Oct. 2009 - Blood tests show Prolactin is at 225 schedule MRI.

end of Oct. 2009 - MRI show my tumor has grown to 1.2 cm.  

Beginning of Nov. 2009 - Prolatin is at 241.  

end of Nov. 2009 - see endo, neurosurgeon and eye specialist.  They recommend for me to stop nursing, go on meds or get surgery.  I decide I want the surgery to just "get this thing out of my head once and for all".

Dec. 2009 - start researching like crazy for alternate treatments.  I start taking Vitex.

Feb. 1st 2010 - Continue my searching and start on Frankincense.   Decide to avoid surgery at ALL costs!

Feb. 13th 2010 - Prolactin is at 201!  Went off Vitex.

Feb. 26th 2010 - Prolactin is at 155.  

April 13th 2010 - Prolactin is 108.

May 6th 2010 - Start weaning process.

June 3rd 2010 - After being off frankincense for 2 weeks Prolactin is at 130.

June 26th 2010 - back on frankincense since 2nd week of June.  Prolactin is at 110.

June 29th 2010 - had an MRI.  Shows tumor at 1.2 cm, but looks different.  Done nursing...mixed feelings.

So, there is my time line.  The way I see it....from the time of my MRI in Oct to the beginning of Feb. I didn't have any blood tests and wasn't on any medication and was nursing (producing enough milk for at least 3 babies) so i have no idea what my tumor did during that time....my questions for my doc are:

-Is it possible it grew during that time and has been shrinking since then?

-What specifically made him think I had surgery since Oct.?

-What does he think in general about my alternative methods of shrinking my tumor?

-What his recommendations are.

Are there other questions I should ask????  I'm sure more will come up.

I got a call from the Doc!

I got a call from the doc!  My mri results are in and (drum roll please)...... My tumor is 1.2 cm!  Now, my first thoughts were not happy ones I will admit.  I thought for sure it would have shrunk and was just expecting it.  I looked over at my husband (the doc was on speaker phone) and he was actually grinning!  I was shocked and mad that he seemed happy with the news.  Anyway, after a second or two of silence the doc asked me a very interesting question.

He asked, "have you had surgery since your last MRI?"

Whoa, hold on....Maybe I better back up a second....Since I broke up w/ my obgyn last November I have been seeing my pediatrician.  When I mean seeing, I mean when I go in for check-ups on my baby I ask him to write me a note so I can get a blood lab done or an MRI.  I have not been good at keeping him up to date on me and my condition.  He know very little about my tumor other than I have one and he has seen my blood results and that is it.  I realize this is my fault and is not a good thing!  BAD SHYANNE!!!!   I forget that doctors can be helpful and can be concerned if you find a good one.  I had such a bad taste in my mouth after the specialists and my last obgyn that I have kept my pediatrician in the dark!!!  (and he is great by the way!)  My pediatrician probably doesn't know what he has gotten into w/ me and my tumor!  haha!

Anyway, back to his question, "have you had surgery since your last MRI?"

I said, "No, why do you ask???"

He said, "Well, it looks different.  It is the same size, but it looks like you have had surgery or something and it has grown back or that it was at one time bigger and been cut back."

I said, "is that a good thing."

He said, "I don't know....we need to talk."  Meaning that I will probably get a cussing for keeping him and all the specialists and everyone else but my blog readers, friends and family in the dark!

So, I set up an appt. w/ his receptionist for next week when I get back from my vacation.  It will be good to see the MRI scans for myself and be able to talk to him in depth now that I have had time to mull over what he told me.

i hate MRI's

Have I ever mentioned how much I HATE MRI's???  They strapped me down after giving giving me two IV's....one unsuccessful the other semi-successful.  Then they had me hold my own torture device (the contrast syringe) and had me hold 100% still as they backed me into "the machine".  After much contemplation, I have decided that once you are in there and the noises have started it is like having someone sit on your chest while you are on your back and having them rhythmically tap you on the forehead while telling you to "name ten candy bars, name ten candy bars, name ten candy bars, name ten candy bars, name ten candy bars, name ten candy bars, name ten candy bars, "  You can barely think of your own name, much less ten candy bars!

When i was a kid, my uncle tried raising sheep.  I was around 9 or 10 at the time and was the perfect fit for the wool stomping position :)  The attached an 8 foot tall bag to the top of the shed and tossed wool into it.  Once it got about half way full I would hop in and jump and stomp the wool down.  If I was lucky I would pull myself out before they threw more wool in....if I was not, it would come down on top of me and I would feel like I was going to suffocate before wiggling my way above the wool.  Not to mention the ticks!!!  Let's just say that after that, I was extremely claustrophobic and the MRI machine reminds me a bit of the wool bag!

When the annoying, rhythmic buzzing noises are not being made, all I could hear was a noise that sounded like a sick squawking bird.  It was quite disturbing.  I tried so hard to fall asleep, but the IV was bugging me and the table kept shifting so it was nearly impossible for me to take deep enough belly breaths to help fall asleep. Anyway, the overall experience left me extremely anxious the entire day.  Luckily I had both of my boys were waiting for me at home and that helped greatly.....

.....results are forth coming.  I'm really hoping it has shrunk, but as long as it is not growing I will try to be happy!  Considering my rate of growth was quite rapid while pregnant I will try not to be disappointed if it hasn't shrunk a ton.  Plus, I am nursing (well, trying unsuccessfully to quit) and I know it would be very hard to shrink it while nursing.  I really want to get pregnant again in a bit and I don't want to get pregnant until the tumor has shrunk a bit.  My levels were at 110 last week, so they are going down again, but not as fast as I would like.  I guess patience is not my strong suit :)  Wish me luck!