Stormy Night

I used to have a blog for my writing called Typewad. Hopefully I'll get it working again soon, but til then I'll post my little story here. It doesn't seem at first to be about cancer, but everything kind of is effected by the big C now, so you decide.

I am of the people who lived in the lands of great and dangerous winds. Only those who could survive a 70 mph wind were able to reproduce. My genetic code carries their experience.
Some of you are of the people who lived in the lands of mild and comforting winds, never having to be afraid that something as wonderful as a soft breeze might suddenly act like it is going to kill you.
So I understand, if it feels to you like my fears are unreasonable.

But I'm not stupid and I know that it's possible that the storm coming towards my house with 70 mph winds might hold together and arrive destructively. It HAS happened before. Just not right here where we live, but our neighbor had a giant tree knocked over in a storm like this.

I ask myself if our house can withstand 70 mph winds, and wonder what kind of damage is possible. I know it's reasonable to be scared and might be dangerous, but we just have to hope it doesn't hit us. I also know it's okay to take reasonable precautions in dangerous situations.


So I take my blanket and sit in the kitchen away from the big windows facing the direction the winds will come from. And I hope they don't come cause it would make a mess. And I know this because when I was 5 a bad storm blew out the picture glass window of our living room. And I can still see it in slow motion. And I remember before that being in the yard with my Mom trying to bring the laundry in before the rain hit. And the wind lifted her 1962 dress up over her head like I'd never seen. And I didn't understand how we would be safe in the basement because I thought a tornado was like a dragon and just come down the stairs. I waited, sure it would kill me. Til my now dead brother David looked through the little window and said our roof just blew off, and we didn't go back up til the sirens stopped. Dragon warning over, I thought.

A lot of life is that way. We have to trust that things will be okay because we can't live in bunkers even though it would be safer, but that's not really living. I also know I'm capable of living with fear, even though it is uncomfortable.

So, I will stay up late to check the radar instead of going to sleep now, because I am of the people that get in the closet when a 70mph wind hits a trailer. I am of the people of the land of dangerous winds.

But I do love how when the storm is passed, and the fear is gone, the world feels so intensely real and beautiful. The dangers of life make it more meaningful. I embrace that truth with gratitude, tonight.

Fear fuels beauty and truth if we let it.

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Choosing Life

When I learned last Wednesday that the CT scan showed probable cancer in my liver, I made the mistake of going online and looking up mortality rates. Bad idea.

Sure, many people with stage four breast cancer will die within the first two years, but I am most unlikely to be one of them. And it is true that not all that many years ago, this would be time to start planning my funeral, but that is no longer true.
Today John and I met with my oncologist, Dr Wilks, and she assures me that she expects the chemo to shrink these tumors to nothing. And we'll know it's working because we'll be watching with frequent CT scans. I'm hoping for a nice 10 year remission, like many other women in my situation have achieved. Maybe even longer, God willing.

I have a terminal illness, but it will take a long time to finish me off. I am strong and healthy and much loved. And I will fight this disease with fierce determination.

So, yes, my liver biopsy shows that the 2 masses are metastasized invasive lobular cancer. That means the cells from my main tumor in the breast have travelled to the liver and grown 2 tumors that are each just under 3cm. My bone scan was clear and my lungs and other organs look clear, but since the cancer cells have escaped the original site and travelled throughout my body, it's probable that there are other places where the cancer has taken hold, but the tumors are too small to see. That is why I will be treated systemically with Paclitaxel, which will kill any fast growing cells in my body.

My first chemo treatment will be this Friday, April 26. After that I'll have them on Wednesdays. Three weeks on then one week off. They will continue until the tumors are gone. If this drug does not work for me, there are many others to try.

I really got upset last week, feeling that I was on death's door. I was walking around like in the book "Goodnight Moon", saying goodbye to everything I love. It made me feel like I was already dead.

But I'm not. And I'm not likely to be any time soon.

For me this is an exercise in trusting God and letting go.
From what I've heard that works great when tried.
I am trying!

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Sometmes it's hard to know . . .

Not an easy day.The CT scan shows 2 masses in the liver, each almost 3 cm large. Almost certainy metastisized breast cancer.

I went from stage 2 to stage 4 quick as you please.

But of course nothing is changed, it was always there we just did not know it. Now my chemo will begin a week later, and probably go longer. I will be infused once a week for 3 weeks then have one off. They'll test me plenty to make sure it's working, but I'll ever be completly cured, altho I might go into remision for many years.

That's okay, we're all terminal, I'll just carry a deeper awareness closer to the surface.

We're hoping to get a PET scan and Liver biopsy. Will let you know how it works out.

This is hard news to accept and internalize, but I maintain my belief that the rest of my life will hold much more joy than pain, more love than fear, and more blessings than imaginable.

Love you all and thanks for the prayers and support.

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I wanna know what condition my condition is in

I am struggling today with letting go. Always a difficult lesson for me. My chemo is supposed to start Wed 4/17 and I am taking part in a research study. My oncologist left a voice message on my cell phone yesterday saying that it's critical that she see me Monday morning because of something in my recent reports that might effect my participation in the study.

Don't you just love that kind of thing?

I'm thinking, what reports did she not have last time we talked? There was a CT scan with barium & all of the major organs, liver, kidneys - abdominal stuff. There was also a blood test for liver function. I don't think it's the heart echo-cardiogram cause she had that. Aaaaaarrrrggghhhhhh!!!!!!!

She even called again this morning and left a message. That's what I get for turning my cell phone ringer off and forgetting to turn it back on.

Last time this happened I got worried cause they cancelled my CT scan and gave me a reason that made no sense. Turned out it was just denied by medicaid, and they got it funded thru the study.

This also is probably nothing, but it's a very fishy scary nothing, and I don't like it at all.

Poop on doctors! That's what the little girl in me says. We should run away to Mexico and live on the beach. She doesn't understand that I have to take the disease with me in my body.

I know everything will turn out fine. Really.

So Monday I see my oncologist at 9am (and hopefully let out a big sigh of relief and feel silly for worrying), then I see my surgeon, Dr Holliman at 1:45 prior to having my port installed, and my plastic surgeon, Dr Fearmonti at 3:30. Tuesday I have surgery to install said port, and Wed I go in for chemo at 8:45.

After that we see how I do and I go back in a week to check what condition my condition is in. Then chemo again on May 1, and every 3 weeks til July 24.

I feel great except for my through the roof anxiety level over having to face and accept the unknown. Will be happy when I can once again fool myself into thinking I have lots of control over my life. Til then I just have to have faith and trust.

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Onward we go

I saw my surgeon yesterday and got my pathology report. He says I'm healing wonderfully and will recover comletely. The pathology report shows that the tumor in the left breast (invasive labular carcinoma) was larger than hoped at 2.3 cm, so I will probably have chemo. Monday morning I see my oncologist, Dr Wilks to discuss where we go from here.

The good news is they took 2 lymph nodes from each side and they are clean. They also got clean margins on the tumor. The patholgy confirmed LCIS in both breasts and a very small ammount (.5 cm) of DCIS in the right breast.

When I read that it felt like a bullet shot past my head. DCIS is much more aggressive and dangerous than LCIS. Having the double mastectomy was absolutely the right decision.

Today I saw my plastic surgeon and she removed the last of my drains (yay). She inflated my temporary implants a little more. I'm super grateful to have John go with me to all these appointments and generally take wonderful care of me.

And thanks to all of you for your love and support.

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Where's Jimmie Bell?

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.

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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.

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Looking Up!

I am sewing a new ceiling. Photos to follow.

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Comments

Anyone is welcome to comment on this blog. After you hit comments a box will come up where you type your message. Beneath that is a line that says: Comment as: and it is followed by a drop down box that says Select profile. Just use Anonymous if you are uncomfortable with the other options.

When done hit Publish.

Let me know if there are an problems.

Jimmiewhipple@gmail.com

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Scheduled for Scheduling

I have an appointment with my surgeon, Dr Holliman on Monday, Jan 28. We will discuss my options and schedule the surgery at that time.

Since my diagnosis of Invasive Lobular Carcinoma on Dec 19, I've been living in a bit of a fog, knowing what was coming but not when. So now the fog is lifting and on Monday I will know where I'm at and post whatever map I end up with.

I have been trying to come up with a word that best describes my take on this cancerous experience.
Cathartic, transition, change, new beginning, crap, destiny..

Transformation is my choice.

I will emerge cancer free, stronger, with blessings I never imagined for myself.
My life will be jump-started towards the direction it needs to go.
And I will live in gratitude the rest of my years.

Magnets

Yesterday I got such a lovely surprise! John arranged for me to meet one of my friends at the Gruene River Grill, but it was really a gathering of wonderful women who have proclaimed themselves my "Magnets". We had great food and wine and uplifting empowering words were thrown about like confetti.
I now have an address book with names and numbers of some sisters I can call whatever needs arise. And each gave me a magnet so I don't forget that they are sticking with me through this tough time.
Thanks to Marilyn Baxter (organizer extrodinaire), Susan Angleton, Pam Center, Mickey Craddock, Sheryl Frantz, Kathy Henry, Cindy Peyton, Amber Roybal, Darla Wright, and Sunshine (who could not attend but sent flowers).

It was a few hours of laughter and love that will help carry me through the lows.
I feel so grateful for my friends, and am amazed that they did me such a kindness.
If you wish to be added to the "Magnets" list, just message me you info at jimmiewhipple@gmail.com.

We all need each other, all the time. Hug your friends and thank HP* for your blessings.

*HP - Higher Power, AKA God

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Good luck, bad luck

I have been feeling very down today so I went to see my doc who put me on antibiotics for UTI and a yucky chest cough. She's been my gyno for years and was concerned about why I'm not getting treatment yet. She made a few calls.
Then John called my surgeon and was reassured that there is not such a rush really.Then Alice just called from wings to say that I am approved. With them and medicaire.
So we should have no worries financially throughout this illness, and it's retroactive so will cover expenses already incurred. Being covered by these programs is very important. I still get to have the same oncologist (Dr Sharron Wilks) and surgeon (Dr Holliman).
The next step will be scheduling my bilateral mastectomy. They will stage and identify the cancer more specifically at that time and see if chemo or radiation is needed.
Other than occasionally falling apart into a blubbering mass of Jimmie Jello, I have been working on organizing my room so it feels like a good place for healing. I put a birdfeeder outside the window and hung prayer flags in the trees. I think I'm going to cover the ceiling with LED Christmas lights draped with sheer fabric.

FYI Jimmie Jello tastes like fear and death so I do not recommed ordering it in even he finest of eateries.

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Hmmm, when did I wear that last?

I'm organizing my clothes today. Donating those things that I never wear, putting the things I've "overgrown" away for later. (When you have cancer it's very difficult to say no to the little girl in your head who thinks you deserve ice cream.) I haven't decided if I want reconstrution or not after my double mastctomy. I've always been so natural. Almost never wore makeup or even a bra. I was really flat chested til 5-10 years ago so I know what to wear to make that work. I'm leaning toward saying no right now. Less chance of infection and I can always get fake boobs later. So it's weird to do this work when I don't know how things will turn out. But hey, most things are just a best guess anyway. I'm want to reduce clutter in the bedroom cause I'll be stuck in here a while. I want to fucus on comfort that is condusive to healing. Might move the bird feeders so I can watch from in here.

And more delay

Looks like I won't find out my status with Wings til Monday at the soonest. It is difficult to wait, so we will visit some friends in Austin tonight and stay over to see Winona and Gavin in the morning. Then we'll come back Sunday and play at Augie's.

Delay

No word today from Wings. I'm sure some of thier people are still on vacation. I will call tommorrow. I kept busy aking a giant pot of potato soup. Yum.

Progress

I has been difficult to receive my diagnosis just before the holidays, because all offices were closed til today. Finally I am able to take action towards treatment for my cancer. John and I drove into San Antonio and met with the Wings organisation this afternoon. Wonderful people. I should know tomorrow if they will be able to accept me into their program. Then the physical healing will begin. I already feel myself being lifted up by your love, and it fills me with gratitude.