Saturday
After the last not-so-good visit to find a plastic surgeon, we decided to find our own doctor.
The first challenge was that we were being told that I have to have a referral from my primary care physician. It took a lot of time on the phone with Medicaide to get that straightened out. No referrals are needed and I can choose any doctor who accepts Medicaide.
Called people on the list and found someone who I went to on Wednesday, Feb 5. He has a fairly new practice and was very attentive and kind, explaining reconstruction options. But in the end he said he was not the best person for this situation and referred me to Dr Gina Fearmonti. She is very well trained, specializes in breast reconstruction and recently moved to San Antonio from Houston where she worked at MD Anderson. (I love when a young doctor says, "If you were my Mother this is what I would recommend." )
I saw her Thursday, Feb 7. She has gained my complete confidence. My surgeon, Dr Holliman, will consult with her and the date for my double mastectomy will be set early next week. She thought it would probably be 1-2 weeks. I am very anxious to have the cancer removed.
Of course, being Whipples, we don't prepare for this by taking it easy. No, we decide to remodel the house.
So we boxed up all the books and old radios and electronics and knick knacks that live in the living room, and almost everything in the bedroom and either stored it in the spare trailer house (where Casey and Taylor lived), or it is piled up in the dining area of the kitchen.
John fixed the wombly, holey floors in the bedroom and living room. And now we will paint them and use area rugs. It's going to be wonderful.
I covered the ceiling of my bedroom with fabric which I sewed together and stapled in place. And yesterday we bought french doors at the ReStore to replace the falling apart permanently fogged sliding door that doesn't let me see my birds good enough.
Painting the floors is tricky because they need lots of prep, then it takes at least 2 coats of paint and 2 days to dry. We may be camping or sleeping in the kitchen. Evan will have to access the outside world via his bedroom window, which he says is no problem.
Then we have gigs and parties and a funeral for John's cousin (in Houston) on Monday. So we are keeping very busy.
Thanks to all of you for your love and support, cards and gifts. And the prayers.
I still have panicky fear episodes, but not as often. And I bought an ugly doll who is happy to take all my fear and hold it for me. He finds it tasty.
Saturday, February 9, 2013
Posted with Blogsy
Monday, February 4, 2013
Grateful Frustrtion
Imgine this.
You are a 55 y\o woman with early stage invasive lobular carcinoma. They told you Dec 19, 2012 after the hastily organized needle biopsy in the surgeon's office. And this guy is so cool, he tells you, might be a month or two before we can operate. Gotta get the funding in place.
Said it did not matter if you had the cash in hand, no hospital will admit you without either insurance or medicaide. Or maybe wings. Being the over\underacheiver that you are you are approved by both.
The surgeon happily talks to you about reconstruction and wants you to visit a plastic surgeon. (This is an office which you never expected to see but you now believe every woman should spend two ours in, like visiting an opium den before the first taste).
You have been worrying about this appointment forever it feels like, but must be since the end of Jan.
And now it is fucking Feb 4th, 2013! It's a year later (not really), your father's birthday, It is the day you will force yourself to ask this strange man if he can save your nipples, cause you can handle small boobs, but those are really special nipples. They nursed three babies. They (with help) kept your marraige together through rough times. They are one of your favorite parts of your body, and you'd like to die with them intact.
Then you become fearful that saving nipples might not be good idea. What if they change over time and become flacid? You know they lose sensation, but having rock hard nipples all the time is like your only super power. You spend a few hours every day trying to figure out how to tell this to stranger\doctor in an appropriate way (there is none).
At this appointment you are accompanied by your husband. The staff asks for insurance cards and you explain that you are on the Wings program and also Medicaide and your Surgeon should have informed the office of this this as well as sending your records. Lots of calling and searching and explaining before finally the lady in charge with the loudest voice let's it be known to the world that they do not take Medicaide! They do not participate with Wings!
and you stand there sifting papers that make no sense anymore and ask
then why did my doctor send me here?
That's when you start to cry really hard and loud. And your husband becomes angry and beligerant thinking that they are mistreating you. And you all sit down, and the clueless staff looks up a medicade provider for you (probably the first time in their life they've done it) and gives you 2 possibilities for reconstructive breast surgery.
And you're so freaked out you drive to the nearest office, but it's bad info. Then you call the other one and they agree to see you Friday
So if the records get transferred and everything else is cool (Dr refferal) then maybe there will only be a one week delay to your your actual surgery.
And you are grateful that you have his cancer because you know that you will survive and learn from it. And you are grateful for all those loving you and sending prayers and smoke. But you wonder why God thought it was a good idea for you to stand like a hillbilly rube at a fancy party crying, "But I know I have an invitation in here somewhere!"
Maybe to remind the Plastic Surgeon's staff that real people need real help.
Maybe to remind them that most of the people out there are nothing like their customers.
Maybe because the one doctor on the Medicaide list is the right one for you.
Maybe because not getting reconstruction would be a life changing positive experience.
You are a 55 y\o woman with early stage invasive lobular carcinoma. They told you Dec 19, 2012 after the hastily organized needle biopsy in the surgeon's office. And this guy is so cool, he tells you, might be a month or two before we can operate. Gotta get the funding in place.
Said it did not matter if you had the cash in hand, no hospital will admit you without either insurance or medicaide. Or maybe wings. Being the over\underacheiver that you are you are approved by both.
The surgeon happily talks to you about reconstruction and wants you to visit a plastic surgeon. (This is an office which you never expected to see but you now believe every woman should spend two ours in, like visiting an opium den before the first taste).
You have been worrying about this appointment forever it feels like, but must be since the end of Jan.
And now it is fucking Feb 4th, 2013! It's a year later (not really), your father's birthday, It is the day you will force yourself to ask this strange man if he can save your nipples, cause you can handle small boobs, but those are really special nipples. They nursed three babies. They (with help) kept your marraige together through rough times. They are one of your favorite parts of your body, and you'd like to die with them intact.
Then you become fearful that saving nipples might not be good idea. What if they change over time and become flacid? You know they lose sensation, but having rock hard nipples all the time is like your only super power. You spend a few hours every day trying to figure out how to tell this to stranger\doctor in an appropriate way (there is none).
At this appointment you are accompanied by your husband. The staff asks for insurance cards and you explain that you are on the Wings program and also Medicaide and your Surgeon should have informed the office of this this as well as sending your records. Lots of calling and searching and explaining before finally the lady in charge with the loudest voice let's it be known to the world that they do not take Medicaide! They do not participate with Wings!
and you stand there sifting papers that make no sense anymore and ask
then why did my doctor send me here?
That's when you start to cry really hard and loud. And your husband becomes angry and beligerant thinking that they are mistreating you. And you all sit down, and the clueless staff looks up a medicade provider for you (probably the first time in their life they've done it) and gives you 2 possibilities for reconstructive breast surgery.
And you're so freaked out you drive to the nearest office, but it's bad info. Then you call the other one and they agree to see you Friday
So if the records get transferred and everything else is cool (Dr refferal) then maybe there will only be a one week delay to your your actual surgery.
And you are grateful that you have his cancer because you know that you will survive and learn from it. And you are grateful for all those loving you and sending prayers and smoke. But you wonder why God thought it was a good idea for you to stand like a hillbilly rube at a fancy party crying, "But I know I have an invitation in here somewhere!"
Maybe to remind the Plastic Surgeon's staff that real people need real help.
Maybe to remind them that most of the people out there are nothing like their customers.
Maybe because the one doctor on the Medicaide list is the right one for you.
Maybe because not getting reconstruction would be a life changing positive experience.
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