First of all - whirlwind of activity the last 24 hours. Here's a quick run down. Madeline is on the mend having been on antibiotics for the last 2 full days.. YEA! However, Ginger is NOT. She was getting worse. Keeping that in mind, I get a phone call last night around 6:15 pm from the genetics office telling me the results are in, but they can't give them to me over the phone. Of course they can't - they must know how much we love driving down to Phoenix when it's 102. How nice of them to think of us! So - now I have a PET/CT scan at 8:30 am in Prescott Valley then an appt with the genetic counselor at 2pm in Phoenix and a sick infant. Hmmmm. So - this morning at 7am while I'm frantically trying to finish laundry, take a shower, drink 24-32 oz of water on an empty stomach for my test - I come up with a plan. I say "PJ - we are taking Ginger w/ us to my PET/CT scan and then I'll call her dr from there while I fill out paperwork and hopefully get through and get an early morning appointment - then you take off w/ Ginger while I have my test". Do you know this actually worked! While I was having my scan, we did indeed get an appt at 8:50 - PJ took her in, got her prescription filled (she has an ear infection now too) and got everything handled in time to pick me up, get some lunch (I'm radioactive, remember?) and get to Phx in time with Ginger started on her antibiotics and happy with grandma at home. How blessed am I? Thank you God!!!
PET scan went fine I guess - kinda creepy and REALLY COLD!!! I was freezing the whole time. But I got to do a lot of thinking, personal venting, and much praying. It was nice actually, in a weird sort of way. I'll get these results my Tues/Wed.
And as for the genetics test - well, the jury is finally in. I DO NOT have the mutated gene which would show I am predisposed to breast cancer. This is wonderful news. (despite the fact I wouldn't qualify as one of the cool characters in the X Men movies - oh well) This is good for me, but GREAT for my girls. Now I face the big decision - even though I don't have the mutated gene, do I still want to remove the left along with the right? Will I constantly be wondering if I've got it in the other one? Will the treatment cut the risk of re occurrence in half? I have a lot to think about - but, am so glad this is MY decision, and not the cancers decision (well, sort of I guess). I feel like I have a little more control this way.
What was mentioned by the genetic counselor was "make sure you talk to your insurance company, sometimes if you don't have the genetic testing to back it up, they'll only cover a single mastectomy." Excuse me??? Are you kidding??? Yes, because I just really really want to cut off BOTH of my breasts because I feel like it. I will not make any decision regarding me fighting this disease by what insurance will or will not cover. And if I do decide to go with the bi lateral mastectomy and insurance gives me a problem - get ready for me because they will have me knocking on their door to discuss this with pictures in hand of how much I 'elected' to do this. Sorry to vent, but it is absolutely outrageous.
PJ and I are utterly exhausted tonight - my poor husband, was up all night with Ginger last night who could only sleep sitting up in his arms - so I could get enough rest for this test today. Little did he know how busy he would be today as well. He is taking such good care of me. He said today "there will never, ever be a reason why you should ever have to go to an appointment, treatment, surgery, anything by yourself. You have enough to deal with just having this f*cking thing, the last thing you need to worry about are the assholes out on the road - I will be by your side through all of this." Again, I thank God every day for the wonderful gift of PJ he has given me. He is my light, my friend, my lover - my biggest fan. I am humbled to be his wife.
I'm going to start posting some pictures of this journey as well - but PJ will have to help me. I took some cool ones of the PET/CT machine from today - it was very Star Trek like - very cool. So as soon as he shows me how to post them here, I'll get them up.
I will pray on this surgery decision, and see what God and I come up with. He certainly hasn't failed me yet. Surgery is scheduled officially for May 5th at 11:30at Phoenix Baptist hospital. The hospital called to pre-register me, so that seems pretty official to me.
As all of this approaches so quickly, sometimes I am sucker punched with reality - and I can't quite control when this happens. Last night it happened while we were bathing the girls. Looking at the time line of all of this has been quite amazing. It's been under a month since I was diagnosed - and I'm already scheduled for surgery. Sometimes I just want to stop and rewind. Sometimes I want to just flash forward - it kills me to learn I will be unable to run my family as I do now. It is so hard for me to let others help me in this way - I just ask for strength to let this happen. I can't even put into words how heartbreaking it is for me to know I won't be able to take Madeline to school for a week - or change Ginger's diaper, or feed her, or make dinner for us, or be the wife and mother I am learning to be everyday. I know, it's only a short time, but it was MY time, that is now taken away by this thing, and it makes me angry, and sad, and heartbroken. I am working through this, but it's not a fun journey. As silly as it sounds, I was upset last night by not knowing what I was going to wear - what will I wear that will hide the fact that I don't have breasts? Again, the process of all of it sinking in - and again, reminding myself it will not be like that forever, just a couple of months. Still - heartbroken - it's the best word to describe how I feel. Deeply heartbroken.
On a lighter note - I get to focus on Ginger this weekend, not this cancer thing - which is great! I'm so excited for Ginger's baptism and birthday party this weekend. I want to just celebrate her and how awesome she is - and it will be so nice to have all our friends and family here with us. Not too much mention of the Big C - this is Ginger's day. She actually blew her nose in a tissue yesterday - she's so smart!!!
DINA'S BOOB BLOG - An online journal of my breast cancer experience.
Yea!!!! Some good news at least. You and PJ are absolutely incredible handling all that you are handling. God Bless both of you. And to you PJ, this just brings to mind the first peek into the quality of person you are now by these few simple words, “watch your toes, mommy.” I know I’ve told this story to the both of you before but it bears repeating. You were maybe 2 years old and we were baking and you fetched a chair to stand on to help and here you were dragging the kitchen chair behind me and those are the words you spoke. I was amazed then that someone so little could be so aware of another person in such a simple way that it still touches me. This is who you were then and even more so now. You are both so blessed to have found each other and to find in the middle of all of this pain and struggle, your love has grown stronger. "Our real blessings often appear to us in the shape of pains, losses and disappointments, but let us have patience and we soon shall see them in their proper figures."
ReplyDelete– Joseph Addison