Nov 16th Headaches, Beauty Talk, and Super heros

9am    
 Hello,
I'm having the bad headaches again today (5th day in a row), hopefully this med will work quickly and I will be able to do something fun this morning. I have a lot to tell you all but I'm just going to have to lay down for now. Please pray that these headaches go away.I can't even think! At least I have my sunglasses. I really look cool with the sunglasses and the hair in a hospital room. I like making people laugh. I'm super funny you know, at least my hubby thinks I am!  
Thanks, Heather 

Betty Page, but I'm getting mine red and cut a little shorter.

 3:30 pm- Beauty Talk :)

HI,
             I'm feeling a lot better now, actually I started feeling better around 10am because I took a little pain medication. Don't like taking it, but it was worth it. I want to tell you about the amazing day I have had. I had an appointment at the beauty center and found out that I had a no limit wig policy with no deductible!!!!!!!!!!!!! I love dressing up and this is going to be so much fun! I got one wig today that looks like the normal hair I have, well, before it was blue :)  On order, I have a platinum blond Marilyn Monroe wig and a Betty Page pin up style in red. Holy Cow, I'm one lucky girl. I also got a free hat someone crocheted. The lady Elizabeth was an amazing help and really liked her job. LIKE your JOB. She is also going to show me how to tie the scarf once I get once I have one here. I really want to get some solid color ones to match with anything. I'm going to totally rock this! Another lady there said that she found some really comfortable sleep caps to keep her head warm out of the the American Cancer Society catalog.... I have to find out about that.  I going to totally rock this. And hey, when my hair does actually start to grow back, I'm going to get some cool braids, weave, put in.... I always wanted to do that!
    Elizabeth also gave me some tips about needed to be really careful with my makeup brushes once I'm out of the hospital. I have to get rid of most the make up I already have... I don't have much anyway. She said that I need to find some disposable kinds of face and eye ones to reduce germs. I don't wear make up everyday so hopefully I wouldn't go through to many! I talked to her that I'm more concerned about losing my eyelashes and eyebrows because they give my best feature definition. She had a great idea about getting an eyebrow kit and possible getting some fashion glasses and wearing eyeliner. I would only do all that when I'm already rocking an awesome wig, or if Evalyn really likes me to have eyebrows. 
               I purchased a button that says "Cancer picked the wrong DIVA". I would never call myself a diva but with all these cool wigs I will have to add that to my many labels for myself. They didn't one said said "Cancer picked the wrong Hippie/Nerd/ or Kickboxer"  "Cancer picked the wrong MAMA", now that one would be good. I also stopped by the gift shop and purchases a couple little gifts for people, that was fun. Now, Ladies ( and hubby), you know the shoes I lived in while I was prenant, and will be back in as soon as I don't have to wear socks, the OKA B love your feet shoes??? They have those her 50% off!!! I got a really cute navy blue pair with RED bows. Yes, all of my 4th of July outfits will be complete for the rest of my life. 
             Other blessings today included home made soup, realizing that I can get into all my pre preggo pants now and need to get them up here asap. I'm wearing a white shirt I love that I never wear because my little baby boy is black.  And my hair is BLUE!                Ok, so my super hero name is Bluekemia. I laugh in the face of hair dryers and combs, I can change my hair, be bald, wear cool scarf's, stand procedures without narcotics. I can make people smile and laugh, I can speak words of life over people, I can survive without T.V. to make something out of nothing.             
            My sweet baby girl is 4 month old today! I can't believe it! Michele is watching her today and is taking pictures for me. Thanks Michele, thank you for singing to her :)
              I'll have some medical updates that I will add to the bottom of this post, as soon as I meet with the doc. I'm not sure if any of them took math in a while.... I'm explain later.........

 **Medical MJ**Ok, well, I never saw my new doc today. I'm sure she was just super busy with all the new really sick people and she probably missed me while I was getting my hair done. No big deal..... still have my list to talk to her about. Her name is Dr. A, not sure I got that one yet. I did see Dr. T the internist. Listen  to this, and sorry docs and nurses I don't mean any offense about this but this one just didn't make sense to me. So, you know about the headaches and that Dr. K (clinic doc) came by and said that I'm in the clinical trial for being on the oral chemo for 2 weeks and then off a week and so on. He said that the main side effect for younger people is headaches. So I'm off of it right now, but it is still in my system. We decided to see if that would do it.  Now, I'm no genius, like my hubby ;), but I really rocked some math and science. Generally, you only one to manipulate one variable at a time, if you can help it, to see how it changes the experiment. I'm not saying that I'm all an experiment based on no facts, because they have a lot of data for what they are doing. But, I am the only one here right now if ALL, young, and in a clinical trail for the 2 weeks on, 1 week off. Are you following me? 

             So, if after the week is over and I'm still having headaches we could possibly conclude that it is not the oral chemo and maybe move on to hormonal birth control, or the brand or it. I have never done well on hormonal birth control. We would deal with that then..... If Dr. K is correct, and I feel that he is because I had some issues with headaches on the first oral chemo, Gleevec, then we would deal with that then. AFTER we isolate what is going on. Sounds like a simple experiment  for this formal science teacher and crazy equation lover.                  Now for real... when I say headaches, I mean migraines, really bad. At this point, I'm taking half the dose of the pain medication when I START to get one. It's that bad, I don't have a choice. Yesterday, it didn't come back after the first one, so that is a good sign.
Well, here is where I think of the people on, well was on, my caseload for work and could not advocate for their own medical care. Staff sometimes do not feel that they have the right to do that, to stand up for them like they are their own children. I've had people have 2-3 med changes at once with no way to isolate new side effects vs how they affect behaviors even more........ SOAP BOX.   Ok, so I'm thankful I can do this for myself.
               Dr. T came into today, super nice man, and said that at "rounds" they discussed me starting paxil, that it can help me sleep ( I must be flagged) , and could help with the headaches. I also got flagged by the cafeteria.... that's another story for a food blog. Anyway,  It was already order. Um..... I don't think so. I calmly told him no thank you that I would like to change only one variable at a time, yada yada, what I said up there. I have no other health issues and the week off the oral chemo is perfect. He said that it was my choice and stopped the order. Thank you. 
              Now, no matter what it ends up being, or not being, I will have to deal with these migraines, unless God takes them away first, Hello?? God knows they won't let me take any Tylenol or ibuprofen in this joint, or at home. But we need to know what is causing them. I refuse to go on another everyday medication to see "what happens". All medications have their own side effects. That stuff could make me go crazy....meds are weird on me. If I take Nightqule for example, I'm awake all night. Benedrel... doesn't do anything for me. 5 beers, no problem. This is not a brag and I'm not doing this experiment anymore, but I can drink anyone under the table, except one person, it's takes a lot of hold me down. My uncle Mike and the docs are surprised at the amount of sedative that I got during the bone marrow biopsy and still was awake and still remembered everything. Morphine, for a few minutes for a spinal tap, nahhhh.  I think I need to keep my pain tolerance up, I have a long way to go. One thing that is awesome is that I have not taken antibiotic in over 3 years, meds or in most of my food, no they are able to actually work for me now.  
           If you take paxil or any other medication and it works for you i talk about, please do not think I'm saying anything is wrong with it.... this is my body, yours is yours. I'm not you, and you are not the science experiment right now.... or are you... hmmmm. Don't let me get inside your head too much, I probably would have been a psyciatrist like my poppa Bill, if I could do it over again. Heck, he didn't go back to medical school till he was 30.....
             So, if it is the oral chemo causing this horrible pain, who knows what I will have to do, but at least I can be confident that what we decide, it is the next best step to take. I'm even willing to go home with the headaches to see how I do at home. My home is very peaceful, it's my home, with my puppy dogs, my bed, my hubby, my baby, my view, and my food. I could try aroma therapy, hot/cold compresses, get some rest, get away from all this electricity that is beaming over me this very second, that I can HEAR. Then, decide. (I would be crossing my arms right now with a serious but slightly silly look on my face that says.... try and make me buddy boy)  Remember the steps for a science project, my formal students. You can apply it to life too... don't make to many changes at once!!
         So here I am now, 3:30 am again, and I don't mind it, no one is bothering me. The nurse knows I'm up again.... probably will get another flag... I hope it is a blue/green flag with my super hero symbol on it.... I don't have one yet Gamboa girls! What's funny is that I did agree to try a sleep med for 2 nights so that I'm not up for 4-5 days straight on the steroids (no good for the psyci I found out last week). It worked pretty well for about 5 hours. Good enough for me. I'm a super hero and a mom, we don't need much sleep. 
           This new doc just doesn't know me yet.... only on paper. I haven't even seen this documenation. Reminds me of the steinfield where Ellan's charts are following her from doc to doc about her being a difficult patient and she ends up at a vet... and he gets a call to. HA HA HA   What would mine say?  "30, white, female, 4 month post baby, cries in the morning due to missing her baby (flag) asks a lot of questions (double flag), conducts meetings with directors, social workers, doctors, with an organized list (OCD Flag) advocates for care, unusually friendly toward staff and cleaning ladies, not a fall risk, non aggressive except some passive aggressiveness in her blog that we secretly have access to, clean organized room, doesn't watch T.V (flag), enjoys the arts, is now drawing smiley faces on her mask and died her hair blue (flag), doesn't like most of the the cafeteria food packed full of antibiotic,hormone full meat, and processed additives/preservatives canned veggies (flag), doesn't sleep when others are knocked out (flag, flag, flag),  you get my point.....
            I love my team, I do, so don't think for a second I'm not still at the best place in the world for this, I just think since it's me, I'm advocating for ME. Don't be afraid to do that for yourself... without as many flags. 

Until the next Soap Box. I think I want to make a cute little step stool that says Soap Box on it.... yeaaa.