Okay...here it is 2 am and we all know when you see a post at 2 am that means I am up thinking...not always such a great idea in the middle of the night. You would think since I know that I would just not do it. But as we all know these type of middle of the night times seem to not listen to reason....so here I am.
Tomorrow is my PET scan. Finally. I know it seems like forever but in reality with the operation and then the follow up issues and the holidays...it has not really been that long. BUT it sure seems like it. Yet here we are and I find myself thinking....can we wait one more day. Nah...not really. But a little part of me thinks of this PET scan like a person who thinks..heck if I do not take the PG test then I really can not be PG , right? Speaking of PG...I wish that were my issue instead of this issue. I mean no I do not want to be PG while I am having these issues..( note I am not using the word sick..I feel a dread when I hear myself say the words "while I am sick") so I use the words "these issues". Just thought I needed to share that with all of you. Back to the whole PG and testing thing...I KNOW we need to know. I want to know. But there is a part of me that worries to know. Ya know? The pet scan will be looking at the body as a whole..But as you may recall they found nodules on my chest wall/lungs as a fluke while doing my scan on my neck. So that is what scares me...I know there is something there already. Is this making sense? Ya know it is 2:15 am and I did take a so needed pain pill. Can I just say my neck hurts tonight...OUCH. Okay there I said it.
So for some medical info. Yes I know the blood thing could of been worse. Heck all of this could be worse....but in reality it stinks. I have been stuck everyday for two weeks. They did stick me the 4 times last week for the oncology appt. But I did need tons of blood work done. What happened was..the blood would clot and we would end up not being able to use the sample. They had to use a certain needle due to my veins being bad last week. The worse is when they say..we are going to try in a vein in your elbow...YUCK and OMG ...are you serious? I am sure we will be talking about a central line when the time comes. Philip has had many of those..and while I hated the idea of him needing one..I grew to love him having one for his meds and blood work.
There were many things that came out of my oncology appt but I thought I would touch on a few of them tonight.
First and really important was the fact that the oncologist is a angel sent from Heaven. She is young and has 4 kids...and I can talk to her like I would any one of you. She is just "normal". I love normal right now.
It is very clear I have a serious autoimmune issue going on. While I was PG it was found that I have anticardiolipin and also Lupus anticoagulant. These had to be treated with steroids and a blood thinner. After knowing this and looking at my records the Oncologist ordered some very sensitive testing to be done. It was explained to me that a autoimmune issue such as mine can be very serious and cause the body to turn on itself. She explained it that the body fights itself and attacks the cells and organs. The type she is leaning towards for me is hard to treat and very dangerous. She said we would NEED to get it under control while we are treating the cancer. Because if we do not ...and we get rid of the cancer..it will not stay away. It is a dual issue. My first treatment for it is a high dose steroid treatment. It will need to be a higher dose and hard core due to me having steroids with my PG from 15 weeks thru delivery. As she talked about the steroid treatments she asked how my marriage was and if my DH was supportive. Humm...I guess she is setting up how hard all this could be. LOL. But we will do it..we will..we will..repeat after me..WE WILL...right?
Next...I had a certain test done that came back elevated. It is now being done for a DNA testing...something I would never of really done. Not that I am against it...I just would rather of not known. But now I will know. With this info comes a price..the price is..what to do with the info. It was clear from her that IF these test came back elevated we would need to proceed with a double mastectomy . Needless to say that was hard to hear. One issue is...I have a lump found on the left breast on mammogram and a follow up ultrasound. We had planned to do a MRI of the breast..but after the original first stage of the DNA testing she said wait because we may end up just having to remove the breast. My mind said WHAT are you talking about..My heart said...Dear God...NO . But my reality says..whatever it takes. The reality part is said in a whisper. But I will do whatever it takes. I just hope it does not take that. Okay let me rephrase that...I will pray it does not come to that...and if it does..then help me know it is a clear path answer and the right thing to do. I do know that this is the second oncologist who has said this..so I feel pretty satisfied this would be the right path to take IF the test is abnormally high.
One last issue...I think I mentioned I had the infection on my face. They took cultures . The results were sent to my Dr and she called me Wed to explain what they were and what it meant. The bottom line is..it is a odd , weird and scary infection. I am pretty sure I got it while in the hospital. I have been on antibiotics for 10 days not to treat it. I have been done for 2 days. I now have 6 spots vs the two spots. I will be calling in the morning to see what we need to do. I know it sounds vain..but I hate to have it on my face and I hate to wear the bandages on my face. Can't a girl just have a place to put some lip gloss? So I will get to the bottom of what we need to do tomorrow. I worry a little cause one is by my eye...Not wanting that...ya know?
I would like to share how blessed and thankful I am ....Christmas eve I was so sick. I threw up all day and no matter what I did , including ZPhron I could not stop being sick and not get my pain under control. I made myself pull my head out of the toilet and fake it till I made it. We ended up having a nice Christmas eve at my inlaws. It was really important to me to make sure the kids had a nice time..and they did. Something about kids on Christmas ever is magical.
I know I have rambled tonight. I just had things I wanted to share and I dumped it out here. If I did not have to be up in a few hours I would go back and work on this post more...but at 2:50 am ...it is what it is...I have a feeling you all understand.
I am blown away with the cards and the sweet notes of encouragement. I would like to thank Anna who did not leave a address of a blog address. Anna your kindness was overwhelming. I am thankful and humbled. Thank You so much. There are many more I need to thank and I will in private emails during this week.Watch for my emails. But Miss Anna made it hard for me to do that with no contact info...lol. And I had to let her know how much she touched my heart. So all your sweet ladies who are sending me cards and messages . I LOVE them and I read everyone of them. I have the cards all over the house as a reminder..I am never alone. Thank You all.
I will be paying back the kindness by playing it forward...soon.
Okay 3 am and I guess I have rambled enough...sometimes I think I should hit delete when I do these type of post...but I won't. I have faith most of you will get where I am coming from, even at 3 am.
Thank You all for your support..I FEEL the prayers and the SUPPORT. I am so blessed by each of you.