So..... Thursday last week (February 18, 2016) I leave work for my "long lunch" to get my bone density test done (dexa scan). I go to the imaging center, I wait for my turn.... go back... fill out a questionnaire... then I wait some more.... then a radiology tech comes over.... reads my questionnaire. She says "When did you have a nuclear medicine test?" "Yesterday". "Yesterday?" "Yes, I had a bone scan." She rolls her eyes and says "those scheduling people know better! We can't do your bone density today. It will give us false readings! They tell you what to wear, but not anything else. I'm sorry." "It's not your fault." "oh I'm still sorry, you can call central scheduling and set up a different appointment." I think to myself, you mean those people that set up THIS one? I ask "Can I just set one up while I'm here?" "I think so..." So, I walk up to the front and I AM able to set up a new appointment. So I go back NEXT Thursday for the bone density test... I am going in the morning before work.... I am just shaking my head....
Also last Thursday, Brad decides that he is fed up.... (I love this man)... Neither he nor myself have heard from the genetics testing people.... I have no test scheduled or appointment scheduled with the genetics counselor. He does not want me to wait. He has called the genetics people and gotten voicemails 2 days in a row. He also has been told it has to go thru Children's hospital. So, he calls the genetics department at Children's. First he is asked if he is accustomed to making appointments for his wife. They do not understand they are only making him fight harder... (again, I love this man). He explains a couple times that my oncologist wants this test completed and that the results of this test determine whether or not I have a lumpectomy or a double mastectomy. He says my oncologist wants this test completed because I am under 50 and have an aggressive, invasive breast cancer. He finally gets thru to them! (Go BRAD!) The person I am SUPPOSED to see is out of office until sometime next week... He says, "We don't have time to wait". Miraculously, they get me in at 9am Friday February 19. Yes, the next day! Well, Braden Espich does not let the grass grow... He calls our insurance because Children's told him our insurance may require prior auth before the test can be run....
So Friday, I go to work for a little over an hour and then Brad meets me at Childrens. Let me say.... I have had very little experience there... We took Rebekah there as a 2 year old for heart testing that turned out to be an overzealous pediatrician.... We took Cody to the ER there once because we thought he broke his arm... Then our grandson Jaxson was in there this fall with pneumonia.... Thank you God that this has been our experience there... We sat in the waiting area at the genetics department. Children come in who are blind... in wheelchairs with little upper body movement.... all kinds of things.... Thank you Lord.....
Anyway.... the genetics counselor meets with us. Decides I'm at low risk. The genetics physician meets with us. Talks to us... asks if we have considered a second opinion or if we are going with what we have been told.... Then they tell us, it's up to us if we want the test run... That our insurance may pay 80%, they may not, but the one lab they want to use that can get the results back in 10 days will only make us pay maybe $800 if our insurance doesn't cover. My eyes bug out... Brad says, run it. Her doctor wants it done. Her surgery depends on this test... do it. I look at him. "I don't care Sara. We need to know." They also told us that there are three possible answers on this test.... One is no variances and no changes in the DNA... that means that you are negative for the BRCA gene (or the Angelia Jolie test).... It can come back with multiple changes and such which indicate you are positive for the BRCA gene.... Then, it can come back in-between. Which is some variances and some changes... Which if there was nothing going on, they would just watch you and maybe do mammograms every 6 months or so... However, when there is SOMETHING going on (like in my case), you have to make a decision...
They take us down to the lab... and let me say, I know that sometimes it can be hard to draw blood on people. I am a registered nurse and I have done home health care and hospice care and I have drawn labs on lots of people. I would think that at a Children's Hospital, drawing blood on an adult would like cake.... apparently I am wrong... The lab tech tried the back of my hand (because my left antecubital space ((elbow)) looks rough).... well, she dug and dug and then my vein blew.... I am 3 days out and my hand STILL hurts... She finally got my right antecubital space... drew the blood and it was in a syringe, not a vacutainer... Personally, I am concerned... I hope that this DNA test can be in a syringe and I am personally worried about coagulation.... But, hey... I never have drawn blood for this test, so.... maybe I don't know what I'm talking about....
Now we wait.... we wait for results.... at least 10 days... They are going to call Brad with the results... So, we'll see....
That afternoon, I'm back at work... my CELL PHONE rings.... I answer, because hey... I have had a lot of tests recently.... This girl tells me her name and says Dr "N" wanted her to call because the stress test I had done at the hospital the other day came back abnormal and... "What? I'm sorry... stress test? I didn't have a stress test?" "You didn't?" "No..." "Well what kind of tests did you have done?" "I had imaging done.... " "Oh.... maybe I have the wrong person.... let me call the doctor and find out for sure." "Are MY tests ok? " "Oh, I don't know, probably... I have to call the doctor." So she hangs up... I sit there panicked... I wait... I call her back... I ask about my tests and the previous phone call. She says, "Oh I got the wrong number, the wrong Sara. She (the other Sara) had a stress test at the hospital and it was abnormal and she needs a cardiac cath right away" I'm sorry... WHAT?!?!?!?! In what world is that acceptable to tell a stranger? I call the hospital and ask for the HIPAA compliance officer. Of course I get a voicemail. I left a pretty snarky rude voicemail... but hey....someone I don't know just called my cell phone and told me I need a cardiac cath and then says it's a DIFFERENT SARA! WHAT?!?!?! Whatever......
I think call my surgeon's office... I tell them what happened... They are appalled.... just like me... but, my wonderful surgeon's office looks up my test results.... My echocardiogram was normal. Normal normal normal... My CT scan was good, no evidence of metastasis... a small cyst on my liver, but nothing to even think about.... Chest X-ray clear... lungs clear, no atelectasis (collapsed lung) and no nodules.... bone scan shows no signs of metastasis however, it indicates that I have "degenerative changes" in my knees.... (arthritis). I laugh.. I said "yeah... I thought so... I looked at the scan briefly while they were doing it and my knees were lit up like the fourth of July."... So, cancer not anywhere else... I have arthritis in my knees (which most days I feel it) and I'm breathing well...
Today (Monday February 22)... Brad gets a call from the original genetics lady... He said she was nice and concerned. I get a call from a lab... Not sure what test they were running... Don't know if it was the blood test or one from the biopsy tissue. My doctor talked about that too.... She was talking so fast and I was not sure... They needed my permission to move forward and do the test. They have spoken to my insurance and while they cover the test, they will only pay if my deductible has been met. I just laugh... Of course, there is all kinds of help out there for cancer patients (I am told) and she tells me that they have financial help available if I need it.... Brad ALSO calls our insurance company and asks if they have made a decision on paying for the test.... they don't know. He said, "I will call again tomorrow." I love this man!
In the mean time/ inbetween time... one of my test results came back, the CA27.29... it was 16.6 From what I can grasp (and remember, I was NEVER a cancer nurse)... this test tells where your cancer is and if it is spreading... No, it is not spreading according to this... and this coincides with my imaging tests.... so yippee for me! Only cancer in the breast and if it is in the lymph nodes, it is only microscopic....
Praise GOD! While this is stinky and #cancersucks But so far it is likely only in my breast.... if I could only find out if I have the Cancer gene and what type of surgery I am going to have..... another day.... one day at a time.... :) God is good.....
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