I have a couple updates.. Thursday I went in to my Endocrinologist expecting some finality and a script for some meds to get this tumor docile. For something so small it sure it wreaking havoc on my body! Well, I should know by now to not expect anything-- that is a key to happiness.. Since my general physician and the rest of my team are all at College Park they can see and share labs, reports etc.. Well, this doc is at a specialty center at Shawnee Mission so he had no access to ANY of my info. He had a fax of my basic info but no bloodwork results etc.. Luckily, I carry my MRI report in my purse now all the time in case someone needs to see it. So he was able to make a copy of that but, needs to get some bloodwork done so he can see what all my hormones are doing. He also mentioned being concerned with my Adrenal gland which regulates and pumps Cortisol. So I have to take a pill the night before I go get blood drawn and fast for 8 hours. That appt is set up for Tuesday 30th @ 9:15am. Then I will go back to see him on Nov 7 for results and possibly more tests, but lets hope not!
Monday I meet with my Neurologist about my papilledema aka eye issue.. I have no idea what to expect there. All three doc so far think its unrelated to the tumor.. Who knows?
Tuesday I go back to the Ophthalmologist to do a field vision test. It check for any loss of vision as well as glaucoma and other tumors.. I will probably need someone to come with me since I suspect I will be dilated..
One more thing, my tumor is causing my body to have another period 8 days after my regular cycle ended. If it doesn't clear up by Monday I need to go back in to see Dr.W
That's all for now! I'm a mess, haven't had time to process much just moving from one thing to the next.. Trying to stay brave for the kids and keep busy. I have moments of the ugly cry when I'm alone.. Which is rare.. But I do love any messages people send me! It keeps me going strong. Love you all!
Friday, October 26, 2012
Wednesday, October 24, 2012
Stay in the now
I had a good day trying to stay focused on what's right in front of me. For instance my beautiful daughter who wants to show me her birthday cake for me ( magnets from the fridge) she serenades the birthday song to me complete with blowing out candles and "eating the cake together" then she says something that reminds me of my Oma who passed away around the time she was entering the world.. Your not full yet, you need to eat more, let me get you some! :-) precious moments I usually don't inhale and immerse myself in this stuff cause I'm too busy, too late and too tired. I even meditated this morning and it felt amazing. I am starting to really hear the voice within telling me things.. Some call it the Holy Spirit, some your instinct or conscious.. I just call it my intuitiveness- tapped in to something greater guiding me along..
Tuesday, October 23, 2012
Chocolate, Xanex & GOD
I decided to title this post Chocolate, Xanex & God is because they are things that I have used the past few weeks. I've faced a lot of possible diagnosis' and had more appointments and copays in the last few weeks than I would care to have had in the next few years! But amidst all this I have heard God telling to rely on Him. For Strength and comfort and for the amazing people in my life who have held my hand through this.. whether by calling, texting or face booking.. They have all reached my heart and softened it at the exact moment It could have gone another way!
This week we traveled to Red Oak, IA where my parents- in- law live to just spend some time. Nathan's mother and I went to this women's night at her church. They fed us and gave away door prizes, which Mom won one because of her "secret fold"!!:-) then they had a lady speaking on finding Joy in the everyday moments of life. She read a book called one thousand moments - I think? And she decided to test out this joy theory in her family. So she hid 500 pennies all over her house and when the kids came home that day they didn't notice even ONE! She has five kids!!! So the next day she told them to go around the house and find as many pennies as they could. The trick was- you had to yell out "thank you God for-----. Every time they found one. She said it was amazing the joy it brought them and now they never look at pennies the same way! All that said I had been thinking about that and how true it is, we tend to focus on and give more attention to the negative.. I do anyways! Because that's what I am familiar with I guess. I was driving to my biopsy appointment yesterday Nd I was nervous!! No idea what to expect. One of my best friends always listens to KLove radio. I will be honest here and say I don't even have it programmed in my station favs.. But I thought maybe I should flip to it and see if they have anything encouraging to give me.. I had been praying on the way and this song came on by Josh Wilson- never heard of him! I was just shocked yet, not really by the message and how perfect it was for my moment and circumstances.
Fast forward-- I get examined by my General Surgeon and he decides that I can wait on the biopsy as he thinks its related to the tumor and probably won't find anything unusual. How awesome! Yes I was annoyed I had to pay 20 to be told what I already had been saying to my GP. But, I am going to look at the positive! No surgery so far!!
I am on one medicine for my "inter cranial pressure" that makes me very forgetful and absentminded about weird simple things.. I go in Thursday to see my Endocrinologist about treatment for my tumor. Next Tuesday I have a vision field test to check for vision loss, glaucoma or other tumors.. Hopefully it's all related to the one and I can just take some meds.. Best case! I guess prayers needed now that my dr is smart about how to treat me and that I take well to this treatment. I hear some of the meds can make you feel pretty awful! My copays are adding up and I haven't even gotten a dr. Bill yet or know how much this med is but, one of my MOPS friends made a suggestion about doing a fundraiser to help us with all these medical expenses. Not sure when or how but it would be amazing. So that's the news for now... Praying for God to provide for us financially as well as emotionally! Love ya all!!!
This week we traveled to Red Oak, IA where my parents- in- law live to just spend some time. Nathan's mother and I went to this women's night at her church. They fed us and gave away door prizes, which Mom won one because of her "secret fold"!!:-) then they had a lady speaking on finding Joy in the everyday moments of life. She read a book called one thousand moments - I think? And she decided to test out this joy theory in her family. So she hid 500 pennies all over her house and when the kids came home that day they didn't notice even ONE! She has five kids!!! So the next day she told them to go around the house and find as many pennies as they could. The trick was- you had to yell out "thank you God for-----. Every time they found one. She said it was amazing the joy it brought them and now they never look at pennies the same way! All that said I had been thinking about that and how true it is, we tend to focus on and give more attention to the negative.. I do anyways! Because that's what I am familiar with I guess. I was driving to my biopsy appointment yesterday Nd I was nervous!! No idea what to expect. One of my best friends always listens to KLove radio. I will be honest here and say I don't even have it programmed in my station favs.. But I thought maybe I should flip to it and see if they have anything encouraging to give me.. I had been praying on the way and this song came on by Josh Wilson- never heard of him! I was just shocked yet, not really by the message and how perfect it was for my moment and circumstances.
Fast forward-- I get examined by my General Surgeon and he decides that I can wait on the biopsy as he thinks its related to the tumor and probably won't find anything unusual. How awesome! Yes I was annoyed I had to pay 20 to be told what I already had been saying to my GP. But, I am going to look at the positive! No surgery so far!!
I am on one medicine for my "inter cranial pressure" that makes me very forgetful and absentminded about weird simple things.. I go in Thursday to see my Endocrinologist about treatment for my tumor. Next Tuesday I have a vision field test to check for vision loss, glaucoma or other tumors.. Hopefully it's all related to the one and I can just take some meds.. Best case! I guess prayers needed now that my dr is smart about how to treat me and that I take well to this treatment. I hear some of the meds can make you feel pretty awful! My copays are adding up and I haven't even gotten a dr. Bill yet or know how much this med is but, one of my MOPS friends made a suggestion about doing a fundraiser to help us with all these medical expenses. Not sure when or how but it would be amazing. So that's the news for now... Praying for God to provide for us financially as well as emotionally! Love ya all!!!
Thursday, October 18, 2012
One down, three to go!
I went in to see the ENT today about the new mass found on my MRI. He numbed my nose and ran a scope into it to check it out. He said its my Adenoids that are enlarged! Which is not too serious and he doesn't recommend removing them unless they obstruct my breathing.. Which they aren't. So, Finally some good news!! He said to check that off my list of scares :-)
So here are the things I have coming up: Monday morning I go in to get my Right Breast biopsied. They found a band of fibrous tissue and since my boobs are so large they can't see it as well as they would like. I tried to get out of it cause I thought it seemed unnecessary but Dr.Wright was adamant about it, so I succumbed.
Next Thursday I meet my endocrinologist to go over my treatment plan for my Pituitary Tumor.
And finally I will meet with my Neurologist in Nov to figure out the missing piece to the puzzle of my eyes. I also got a phone call today from the ophthalmologist requesting a field Test, which is used to detect tumors or glaucoma.
I will post as I get answers thanks for all the prayers, calls, texts and support!
Love!
So here are the things I have coming up: Monday morning I go in to get my Right Breast biopsied. They found a band of fibrous tissue and since my boobs are so large they can't see it as well as they would like. I tried to get out of it cause I thought it seemed unnecessary but Dr.Wright was adamant about it, so I succumbed.
Next Thursday I meet my endocrinologist to go over my treatment plan for my Pituitary Tumor.
And finally I will meet with my Neurologist in Nov to figure out the missing piece to the puzzle of my eyes. I also got a phone call today from the ophthalmologist requesting a field Test, which is used to detect tumors or glaucoma.
I will post as I get answers thanks for all the prayers, calls, texts and support!
Love!
Wednesday, October 17, 2012
MRI Results
You know its never good when you go into the doctor for results on ONE possible adenoma and they start the sentence saying, So we found a couple things... huh?! plural? Exsqueeze me? Baking Powder?
Yes, 2 things!! A. I have a micoadenoma on my Pituitary Gland. It is less than a cm big and I am scheduled to see an endocrinologist for treatment/ further testing next Thursday.
B. They noticed a mass that turned up on my MRI. It is larger than my tumor and it is yet another tumor!
So, this is pushed my PIT tumor to the backburner and now I am focusing on this lovely tumor. It is known in medical lingo as Nasopharyngeal Mass. If you google Nasopharyngeal every result comes up with carcinoma or cancer..
This is located in the same neigborhood as my Pit gland but, different area code. I am going to see an ENT tomorrow afternoon and from what I have read online. Seems like, the next steps for this bad boy are.. they will scope me through my nose, possible CT and biopsy. I am preparing myself for the worst possible outcome which is the "c" word. But, I did read it is easily treatable with chemo and radiation and much higher success rate in young women. But that is only if it is Malignant! So... I will find out more tomorrow.
Another fun thing I learned is my Optic Nerves are enlarged and I am now being squeezed in to see a neurologist. Meanwhile I am on a diuretic that should help ease the pressure on my eyes and headaches I have been having.
Add in the boob biopsy my GP is still adamant about and I have 4 issues and 4 different specialists I have to see. I went out and bought a notebook tonight so I could keep it all straight.
Will update more later. I am tired and need to just shut my brain off. Night!
R
Yes, 2 things!! A. I have a micoadenoma on my Pituitary Gland. It is less than a cm big and I am scheduled to see an endocrinologist for treatment/ further testing next Thursday.
B. They noticed a mass that turned up on my MRI. It is larger than my tumor and it is yet another tumor!
So, this is pushed my PIT tumor to the backburner and now I am focusing on this lovely tumor. It is known in medical lingo as Nasopharyngeal Mass. If you google Nasopharyngeal every result comes up with carcinoma or cancer..
This is located in the same neigborhood as my Pit gland but, different area code. I am going to see an ENT tomorrow afternoon and from what I have read online. Seems like, the next steps for this bad boy are.. they will scope me through my nose, possible CT and biopsy. I am preparing myself for the worst possible outcome which is the "c" word. But, I did read it is easily treatable with chemo and radiation and much higher success rate in young women. But that is only if it is Malignant! So... I will find out more tomorrow.
Another fun thing I learned is my Optic Nerves are enlarged and I am now being squeezed in to see a neurologist. Meanwhile I am on a diuretic that should help ease the pressure on my eyes and headaches I have been having.
Add in the boob biopsy my GP is still adamant about and I have 4 issues and 4 different specialists I have to see. I went out and bought a notebook tonight so I could keep it all straight.
Will update more later. I am tired and need to just shut my brain off. Night!
R
Saturday, October 13, 2012
MRI Experience
I had my first MRI last week and it was awful.. I mean, I survived and I'm still alive but, I had a major come to Jesus moment in that capsule.. I am already with Jesus but, we were re-enacting the Footprints poem! For Reals!! If you have never been, let me tell you about MY experience.. (please note: I do tend towards the dramatic side)
You go in there sans metal or bra in my case and there are two ladies, one who helps you..and one that is grumpy and sit behind the windowed wall.. Now that I think about it.. They stay behind the windowed wall while the machine is ON and I am on a table attracting magnets to me with no protection.. Weird. Anyways, so she asks if I have tattoos and I say yes, on my arm she says well it may heat up a bit.. WTH?.. Okaay? So I lay on a padded board after I put on my fancy hairnet and earplugs then she straps my head down with a belt and starts to pull this helmet down over my head which covers my whole head to about my shoulders. When this happens I abruptly say " Oh my God!" So she replies " Is that a good 'oh my god' or bad?" "Bad!bad!" I say.. Seriously?! So she asks if she should take it off? And of course immediately I say "yes! That would be great!" well obviously that is not an actual option because she tells me it is needed to take the images of my brain so I either need to buck up or reschedule and get some Valium before I come back. At this point I kinda knew it might be awful so I planned ahead and took a mild dose of anti anxiety medicine.. Obviously not helping so I took a deep breath like i was going to plunge into deep water, I summoned the strength of Jesus and okay, let's try it! I did not want to reschedule.. As I was anxious enough for results and answers and I wasn't gonna be the baby that walked out..
So they put the helmet on and gave me a button to push if I freaked out.. Then they rolled me into a tube and it covered me from my head to my waist. So I closed my eyes and breathed and prayed the whole time.. Meditate might be a better word but it helped!! I knew I could do this for 15-20 mins.. I did feel my tattoo heat up and I did get really thirsty.. Not sure if that's from the magnets or not but, it part of the story.. So, they rolled me out and scolded me on wiggling my feet then I asked if I could have a drink of water and she said no, you have to remain exactly as you are and gave me a shit to do the contrast images.. Of course I have the smallest most elusive veins.
They dug around my arms and let me mention I still had this iron man helmet on my head and I remember thinking.. This is my version of hell! I have had that thought one other time and it was on a canoe trip in the middle of a thunderstorm in a metal canoe and I was freezing and the canoe tipped and I got sucked into the current.. Yes, they are both hell like experiences for me!
I made it out of there with no button pressing and now I get to wait a week for results.. Argh! But I know that if I have this tumor I will have to go back in and do this again and again..
If you are one of the people who asked me how the MRI was and I answered Awful or horrible.. That is why! Not because my results were bad just cause I'm a claustrophobic lady!
You go in there sans metal or bra in my case and there are two ladies, one who helps you..and one that is grumpy and sit behind the windowed wall.. Now that I think about it.. They stay behind the windowed wall while the machine is ON and I am on a table attracting magnets to me with no protection.. Weird. Anyways, so she asks if I have tattoos and I say yes, on my arm she says well it may heat up a bit.. WTH?.. Okaay? So I lay on a padded board after I put on my fancy hairnet and earplugs then she straps my head down with a belt and starts to pull this helmet down over my head which covers my whole head to about my shoulders. When this happens I abruptly say " Oh my God!" So she replies " Is that a good 'oh my god' or bad?" "Bad!bad!" I say.. Seriously?! So she asks if she should take it off? And of course immediately I say "yes! That would be great!" well obviously that is not an actual option because she tells me it is needed to take the images of my brain so I either need to buck up or reschedule and get some Valium before I come back. At this point I kinda knew it might be awful so I planned ahead and took a mild dose of anti anxiety medicine.. Obviously not helping so I took a deep breath like i was going to plunge into deep water, I summoned the strength of Jesus and okay, let's try it! I did not want to reschedule.. As I was anxious enough for results and answers and I wasn't gonna be the baby that walked out..
So they put the helmet on and gave me a button to push if I freaked out.. Then they rolled me into a tube and it covered me from my head to my waist. So I closed my eyes and breathed and prayed the whole time.. Meditate might be a better word but it helped!! I knew I could do this for 15-20 mins.. I did feel my tattoo heat up and I did get really thirsty.. Not sure if that's from the magnets or not but, it part of the story.. So, they rolled me out and scolded me on wiggling my feet then I asked if I could have a drink of water and she said no, you have to remain exactly as you are and gave me a shit to do the contrast images.. Of course I have the smallest most elusive veins.
They dug around my arms and let me mention I still had this iron man helmet on my head and I remember thinking.. This is my version of hell! I have had that thought one other time and it was on a canoe trip in the middle of a thunderstorm in a metal canoe and I was freezing and the canoe tipped and I got sucked into the current.. Yes, they are both hell like experiences for me!
I made it out of there with no button pressing and now I get to wait a week for results.. Argh! But I know that if I have this tumor I will have to go back in and do this again and again..
If you are one of the people who asked me how the MRI was and I answered Awful or horrible.. That is why! Not because my results were bad just cause I'm a claustrophobic lady!
Monday, October 8, 2012
Halloween Costumes 2012
My kids love Halloween, okay.. What kid doesn't? But Avery wants to see the "scary stuff" every time we go to Target! I'm pretty burnt out after how often we frequent Target.. So, they both have had their costumes picked out since this summer. Avery wanted to be "Rapunzel with the long hair" and Ethan wanted to be Mario. Well about two weeks ago I went over to my friend Alison's to help her pack and she was going to get rid of her sons too small Spider-Man costume. I took it home for Ethan since he likes to wear his costume from last year.. Bumblebee Transformer. I figured he would wear it around the house since his other one is ragged.. I've already busted out the sewing machine once on it! So.. When he saw the Spidey costume he was thrilled and declared that this was the costume he was gonna wear.. No more Mario!! Avery also changed her mind and was captivated by a witches broom and hat at target.. I couldn't pass it up since it was half the price of the Rapunzel costume! So here they are modeling their new choices! 
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