As always, things here are never boring.
Since my last post Monkeyboy got a bug bite on his bottom lip and we have had a wonderful run in with MRSA, the results came back on Big B's 24hr urine showing that adrenal tumors are most likely beginning, and just all kinds of fun. haha
This was our first time dealing with MRSA so it was a little scary especially since no one bothered to tell us (doctor and then urgent care who had taken a culture) what the infection was until it was pretty much too late for the rest of us. Considering that I don't like the idea of ANY of my kids being sick plus I have a weakened immune system.... well that didn't sit too well with me AT ALL. Saying I was beyond pissed would be an understatement. Thankfully though no one else got the infection and Monkeyboy is doing much much better. To be honest, I didn't know a whole lot about staph infections before this month but boy do I now! Nasty stuff and I recommend everyone to read up on it because you just never know when it could show up.
As for Big B, we had elevated levels in his test results and had to see another endocrinologist (because his ped endo felt he was old enough to go to an adult endo) to decide what to do next. I felt really comfortable with this endo considering that he is MY endo's husband! After going over the results and talking to Mr Dr Endo the plan is to test Big B every three months to see how the results flucuate/rise. If it looks like things are going slowly then we will wait it out for a bit (because pheochromocytomas usually grow fairly slowly) but if it looks like tumors are forming quickly then the search for a topnotch adrenal surgeon will begin. There is no way in hell I'm letting any of my kids end up all messed up like I am. I love them too much.
So please keep my kiddo in your thoughts for awhile. I'd really rather things not come to him needing surgery. I think they've dealt with enough of this MEN2a bullshit already.
I am happy to report that I did not almost die this month. Amazing I know!! *smiling* Actually, now that I know what to do I see adrenal crisis being a very rare thing for me and I'm very happy about that. Now all I just need to make it through the upcoming appointment with the thyroid/breast surgeon on March 31st and things will be all good. To be honest, I'm scared about that one but really really hoping the lump in my breast is nothing and we can go back to life as usual.
Tuesday, March 25, 2008
Wednesday, March 05, 2008
Life And Almost Death
As I said in my last post before I "disappeared", I felt like hell so on February 6th I went to see my PCP and find out what was going on with me. On the way to his office I started getting extremely horrid nausea and feeling like I was going to black out. Once we got to the office I informed them of what was happening and they still had me sit in the waiting room for 45 minutes. Finally I asked the nurse if I could please go to a room before I passed out.
Once in the room my doctor came in fairly quickly. He diagnosed me with a sinus infection and bronchitis. When I asked him about the feeling like I'm going to blackout and nausea he just said it was probably from the sinus infection. Ummmm okay. Personally I was worried about it being the start of an adrenal crisis. Anyway- got meds for the infection and bronchitis, went home, and proceeded to go downhill from there.
By February 9th I was sicker than I have honestly been in my entire life. It was the worst nausea I could ever imagine and it was a real fight to stay conscious. Finally I told Hubby that I needed to go to the ER because I believed I was in adrenal crisis. Before leaving, I decided to use my injection kit in hopes that it would help ease the nausea some (this part is important later).
I honestly thought the whole thing was no big deal but when I told my endocrinologist about it on February 22nd (that was the first appointment I could get as she's been out of state for a family emergency), she informed me that had I not given myself an injection before leaving I would have died on the way to the ER. That scared the hell out of me!! She then proceeded to explain adrenal crisis in depth to me which is something that wasn't done before and told me exactly what to do when I get sick again. I also found out that doubling my steroid dose when sick was pretty much worthless because I take 5mg a day of Cortef so the most I took while sick was 20mg. Ummmm, I guess when you get sick the LEAST you should take is 40mg in the morning and 20mg in the afternoon. Whoops.
My endocrinologist is sending me to a thyroid/breast surgeon on March 31st because she says that even though the biopsy results on the lymph node in my neck came back benign, it wouldn't have shown up on the Octreotide scan if there weren't cancerous cells in there so she wants it taken out. If this surgeon can do it then we'll have it done here in New Mexico but if she isn't comfortable then I'll be sent to St. Louis for surgery.
My endo wanted me to see this surgeon also because she is a thyroid AND breast surgeon which leads to my second bit of news. My doctor is worried about the lump in my right breast and her opinion is that it needs to be removed and then biopsied because as far as she's concerned it's gotta go whether its benign or malignant. Of course, we will go by whatever the surgeon feels is best in this case and personally I don't care what they do with it as long as I hear the word "benign".
I seriously think learning I have breast cancer would be the breaking point for me. I can take alot of shit but being told yet again that I have another form of cancer would be too much.
I figured that title covered both things I am posting about today. LOL. First, the story about what a shitty month February was...
As I said in my last post before I "disappeared", I felt like hell so on February 6th I went to see my PCP and find out what was going on with me. On the way to his office I started getting extremely horrid nausea and feeling like I was going to black out. Once we got to the office I informed them of what was happening and they still had me sit in the waiting room for 45 minutes. Finally I asked the nurse if I could please go to a room before I passed out.
Once in the room my doctor came in fairly quickly. He diagnosed me with a sinus infection and bronchitis. When I asked him about the feeling like I'm going to blackout and nausea he just said it was probably from the sinus infection. Ummmm okay. Personally I was worried about it being the start of an adrenal crisis. Anyway- got meds for the infection and bronchitis, went home, and proceeded to go downhill from there.
By February 9th I was sicker than I have honestly been in my entire life. It was the worst nausea I could ever imagine and it was a real fight to stay conscious. Finally I told Hubby that I needed to go to the ER because I believed I was in adrenal crisis. Before leaving, I decided to use my injection kit in hopes that it would help ease the nausea some (this part is important later).
So we went to the ER, spent over two hours in the waiting room even though they were told it's a medical emergency, and once we went back were there for another six hours. *sigh* I ended up taking through an IV- two different nausea meds, two doses of steroids, and three bags of IV fluids because I was so horribly dehydrated. Once that was in me I felt MUCH better and continued to get better once we were home.
I honestly thought the whole thing was no big deal but when I told my endocrinologist about it on February 22nd (that was the first appointment I could get as she's been out of state for a family emergency), she informed me that had I not given myself an injection before leaving I would have died on the way to the ER. That scared the hell out of me!! She then proceeded to explain adrenal crisis in depth to me which is something that wasn't done before and told me exactly what to do when I get sick again. I also found out that doubling my steroid dose when sick was pretty much worthless because I take 5mg a day of Cortef so the most I took while sick was 20mg. Ummmm, I guess when you get sick the LEAST you should take is 40mg in the morning and 20mg in the afternoon. Whoops.
My endocrinologist is sending me to a thyroid/breast surgeon on March 31st because she says that even though the biopsy results on the lymph node in my neck came back benign, it wouldn't have shown up on the Octreotide scan if there weren't cancerous cells in there so she wants it taken out. If this surgeon can do it then we'll have it done here in New Mexico but if she isn't comfortable then I'll be sent to St. Louis for surgery.
My endo wanted me to see this surgeon also because she is a thyroid AND breast surgeon which leads to my second bit of news. My doctor is worried about the lump in my right breast and her opinion is that it needs to be removed and then biopsied because as far as she's concerned it's gotta go whether its benign or malignant. Of course, we will go by whatever the surgeon feels is best in this case and personally I don't care what they do with it as long as I hear the word "benign".
I seriously think learning I have breast cancer would be the breaking point for me. I can take alot of shit but being told yet again that I have another form of cancer would be too much.
For now though I'm just enjoying life whenever I can. I let Big B get his ear pierced for the first time two weeks ago and last week I let Sis get two new holes (three total) in her right ear. I think at this point Hubby is worried that I'm going to bring the 5 year old home with a piercing. Haha
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