The First Followup

Well it's December 1st and for me that means "the day" has finally come.

It's the day that my Surgeon, Oncologist, Radiologist and Internist all told me to schedule my six-month followup mammogram on the right breast. This because it contains all the same specks of calcifications that my left one did. So it has to be watched. Closely. From now on it's a perma-date. Me, the mammogram machine, and my right breast. Every six months from here to eternity.

At least the mammogram will only cost half as much now, har har!

It's funny, but in September when my Oncologist kicked me lose and told me I was done with all doctors, I hightailed it out of there fast. Physically, emotionally, mentally. Out of there. Less one breast, I didn't look back. And trust me, life has been sweet.

But because it is December 1st, I am forced to go back. Back there. Again.

I opened my day planner to "the page" in the back that has all the doctor's numbers, addresses, fax numbers, emergency numbers, and more. It's been several months and unexpectedly my gut fell straight into my shoes. It feels like being forced to open a doorway to the past. A rush of old emotions. And not in a good way.

I remember that my ex-mother-in-law, who had her own harrowing encounter with breast cancer many years ago, absolutely hated her follow-up visits. Days beforehand, she would become filled with anxiety and it seemed there was nothing we could do for her except be supportive. I remember distinctly at her 5-year-mark when she was FINALLY declared CANCER FREE. It was a great day in many ways, but for her, to never to have to go back for another damned follow-up visit was one definite perk of the 5-year milestone.

She is a hero to me, by the way. Like all women with this disease who do what they have to do, she did it with grace and calm and strength. She remains cancer free to this day.

So, my appointment is for Wednesday, December 3rd. I very much wish I could report that I am not apprehensive. That I am going in with all the confidence in the world. But, I will say that like many women before me, I will go and endure and that will be good enough because I have already proved my bravery and taken my stand against cancer.

Fingers crossed.

Love, Jen

20/20 Vision

Recently a dear and treasured friend emailed after we had been out of touch for some time. Having lost my email address, he Googled me. As a result found this blog at which point he learned I had cancer. He then sent me a note asking, "Your blog just went cold! Did you die? Please say you didn't die!"

Funny! But he's right, it's been a while since I've been here so here I am.

I titled this blog post "20/20 Vision" but it really should be titled "1/1 Vision." I am a little distance away from the cancer now, so I can look back and gain *some* perspective. However, time will provide me with a lot more. It's a lot of learning, so slow is good.

I am back to what I was, plus. I still have the unknown lump on my ribcage, having not found the time to go back to the doctor just yet. Or maybe I just haven't found the inclination. Either way, little lump is safe there for now.

My scar has healed and it does not physically hurt. If you google "mastectomy pictures" you can see what it looks like (well, not MINE exactly, but mastectomy scars in general). I will warn you that it is very alarming to look at. Somehow, despite my own 10 inch long scar, I've made a pretty fast peace with how it looks and feels. Except for an occasional cattie-wampus bra incident, I look and feel the same from the outside looking in. So, all is well there.

I don't worry much about getting more cancer. Rather, I simply accept that more is in my future due to a high-level family history and my young age at first occurrence. Knowing this does affect the choices I make. For the better. Mostly.

And I feel much more at peace than before, internally. The difficulty that is coming into play for me now is dating. I have a very picky criteria list, to which I must now add, "person who is willing to put up with one boob and a 10 inch scar." To be honest, it's not much of a dilemma for me. My attitude is that if a person can't do that, then they are not for me. So, I go back to a state of being thankful for the pretty day and not worrying about much. It's just how I roll these days. Peace has its advantages.

(By the way - the picture above was taken from our ocean front cottage at Cape Cod in October. I'm still trying to get a picture slide show together ...)

Peas, Jen

Congratulations America

"Judge a man not by the color of his skin, but by the content of his character."

~Martin Luther King

How Did You Find Out You Had Cancer?

I get this question a lot. Here's the answer.

Picture me at home, peacefully working at my desk.

Phone: Ring Ring.

Me: Hello!

Voice: Hi, this is McKay Dee Hospital. We're calling to schedule your surgery for next week.

Me: ....

Voice: Hello?

Me: Surgery for WHAT?

Voice: Ummm ... err ..... ummm .... Hasn't your doctor called you yet?

Me (voice escalating): What would my doctor call me about???????

Voice: Well, er.... your mammogram results.

Me (working up to a combo yell/shriek): MY MAMMOGRAM RESULTS!?!?!?!? WHAT ABOUT THEM?!?!?!?!? WHY DO I NEED SURGERY?!?!?! WHAT IS GOING ON?!?!?!?!?!

(This would be my first, but not my last, encounter with icy-cold fear running rampant through my veins - the kind that dumps in when you intuitively know that the news is not good.)

Voice: Er ... we need you to call your doctor and then call us back. Click.

That's how I found out I had cancer. Pretty 1950's eh? I felt bad for the voice because that must have been awkward to say the least. I called my doctor at the speed of light. I was told, "She is in a meeting and is not to be disturbed."

I said, "DISTURB HER. NOW."

They wouldn't. I was told to call back in 2 hours. I waited. Called back in 2 hours.

"She's still in a meeting, call back tomorrow." Compassion is not dead, it's just completely absent in Utah. Trust me, this is true.

Then I said some choice items that are not repeatable here. Later that day, the doctor found some spare time to call me and to confirm that I did indeed have cancer.

Some days are worse than others. That was a bad one.

Loves to all - Jen

One of My Heroes

Find more videos like this on My Crazy Sexy Life

My Friend Henry Writes About His Son's Passing, September 13, 2008 (UPDATED)

Henry writes:

Dear Friends & Family:

The hospice nurse was here this morning to examine Cameron. He is showing clear signs that he is at the end of his earthly life, and heading off on his next adventure.

He is in no distress or pain, and looks so beautiful. The nurse described him as regal. Take comfort that this process will be gentle and pain-free. We have days or hours left, and are now in vigil mode.

I am sad, of course, and yet strangely relieved. I do not intend to despair or fall into a dark depression. How can I? My son's life was not a tragedy. It is a triumph! This is a passing that he is worthy of. If it were me instead of him (and I wish it were), this is how I would want to go. With such grace. Such grace.

As the full moon approaches (Monday), imagine Cameron rocketing through space on the back of a comet, his laughter ringing through the universe. Free. Free of cancer. Goal met!

Please light a candle in Cameron's honor, and read the following passage to your children and grandchildren. A friend sent it last week, and it brought me much comfort. It warrants repeating here.

I am standing upon the seashore. A ship at my side spreads her white sails to the morning breeze and starts for the blue ocean. She is an object of beauty and strength. I stand and watch her until at length she hangs like a speck of white cloud just where the sea and sky come to mingle with each other. Then someone at my side says: 'There, she is gone!''

Gone where?' Gone from my sight. That is all.

Her diminished size is in me, not in her. And just at the moment when someone at my side says: 'There, she is gone!' there are other eyes watching her coming, and the other voices ready to take up the glad shout 'Here she comes!' And that is dying.

~Henry Van Dyke

Peace out, my son.

Henry

Cameron's Place

UPDATE: Cameron passed on the next day, Sunday. Here is an incredible poem one of Cameron's friends wrote:

SUNDAY, SEPTEMBER 14, 2008 11:32 AM, CDT

That Joy Thing

I stopped by the creek.

It was flush and triumphant again,

from the rains.

The waters were singing your laugh,

crashing over rocks in a crazy dance—

you know—

with that joy thing you splash everywhere.

Tonight the moon is

cradling her swollen belly.

Her light is soft.

Not as bright though

as those stars we dusted off your shoulders

—while you lay in grace.

I felt the warmth of your breath yesterday

as I leaned in to gather more memories.

The flame from your warrior’s heart scorched mine

And I tucked it away, a treasure.

This earth can be cold.

For you,

for us, I will tend and share your fire.

I won’t hold you. (As if I could.)

Your trail is blazing across one landscape,

moving to the next.

Lay your body down, dear.

I see that it is too small now

to hold all of you.

It is hard work to wrap that much radiance—

But it was so lovely to bask in yours, as it spilled over

into this little moment we call life.

by Kerry Miller, in loving tribute to Cameron David Allen

Sunday, 04/16/95 - Sunday, 09/14/08

Nothing That a Little Art Won't Cure

Hey all, just to check in to let you know that I am healing exceptionally well and feeling fine. As it turns out, the lump below my incision (see the blog post below) was just a byproduct of the surgery. It hurts less each day and I am doing great.

In the meantime I am back to my full time shenanigans including a weekend trip to Denver with Liz to view some of her paintings in a First Friday showing in the Chac Gallery on Santa Fe in the Art District. We had an amazing time and she saw many of her old friends there. We also spent time hunting for an apartment for her because she will be moving back there shortly. Great fun!

Here's a couple of pictures from our trip:

Several highlights included having dinner with Liz's good friend Sophie (above) at Watercourse (an amazing vegetarian restaurant) and lots of reminiscing about Liz's old haunts.

Love you all - Jen B.

Icy Fear Through My Veins

Recently I made quite a splash around my town and e-town when I announced to the world (well, just my friends and clients) that I was cancer-free. I was kinda loud and proud about it actually. Friends from high and low were full of congratulations for me. Then we all did what we all do, got back to work.

I've been healing nicely (officially 2 1/2 weeks after surgery as of today). My horse's patoot of a surgeon did a very fine job by leaving only the teeniest of scars straight across my chest. Apparently this isn't always the case with mastectomies according to those in the know. So, even though I don't like the guy, I will say that he did a really good job on me, and I have enjoyed the lack of complications.

All is well then. Or it was until I looked in the mirror this morning and saw a lump protruding from my rib on the left side. It's true that I've been feeling some pain there since right before my surgery, but dismissed it as nothing. Now, I could clearly see it protruding, 1/4 inch out, maybe 3 inches straight down from where my tumor was located before it was removed.

ICY. FEAR. SHOOTING. THROUGH. MY. VEINS.

That is the only way to describe what happens to your mind and your body when you think it might be possible that you have discovered more cancer. Or that the original tumor left a little present. Or a baby. Or whatever the hell it is.

I had heard of this icy fear thing happening to other cancer folks, but didn't think I would be the type to fall into the I-once-had-cancer-so-now-every-little-thing-might-be-cancer-hypochondriac pit. But in I went, and fast. There was no stopping it. Balls to the wall full out fear. It definitely wrecked my day.

I have a followup with my stink-ball surgeon tomorrow and I will ask what it is. Hopefully ... well, I don't know, why speculate? I'll keep you posted.

As always, I couldn't do it without you. But if you could hold my hand for a minute, that would be great - Love, Jen B.
http://www.jenniferbunker.com/

It's Over

Two and a half months, 22 doctor's visits, and one mastectomy later, I am officially done with cancer.

My Oncologist said that I will not require any further radiation, chemotherapy or even Tamoxiphen. I have no more increased chance of contracting cancer than any other person on the planet. It's over for good.

I have been released back to my regularly scheduled life.

I'm not the same. I'm better.

And I couldn't have done it without you.

All my love and gratitude - Jennifer

36-Year-Old Christina Applegate - Double Mastectomy

I thought that this article about Christina Applegate was interesting. (Article on MSNBC). After her diagnosis with Breast Cancer, she decided to have a double mastectomy after also learning that she tested positive for the BRCA1 gene. This meant that she had her healthy breast removed at the same time as her cancerous breast. In the article she jokes that after her reconstruction is finished she'll have the perkiest breasts around!

I really commend Christina for making that decision. I'm sure it was agonizing to make. I will also be tested for the BRCA1 gene and if that test is postive, it is likely that I too will have my good breast removed and then do reconstruction on both of them.

But unlike Christina, I wasn't ready to say goodbye to both of them. I am glad that I still have one. Maybe it is baby steps, but it was right for me.

My hat is off to her and others like us who are forced to make such difficult decisions, and then do it with grace, style, humor, and positive energy. We are pretty amazing women if I do say so myself.

I feel great today, how about you? Be sure and give yo momma a hug today, okay?

I see my Oncologist later this afternoon. I'll report in about what he says.

My love to all - Jen

www.jenniferbunker.com

The Surgical Follow-up

I went to see the surgeon today for my one-week post-surgery checkup. I was excited and nervous because I knew that I would be getting my drain out, all the bandages off, and then going over the pathology to find out if the cancer has spread or if we got it before it did.

To be honest, I'm not sure what I was more anxious about. Just thinking about it all gave me a mild freak-out in the Doctor's waiting room but sweet Liz managed to settle me down before the lid blew. Sara is in Montana on a well-deserved vacation, so poor Liz had to endure this one all alone. She hugged me sweetly and soon it was my turn to go back to an examining room.

I was terrified that the staff or my doctor would remove my 12 inch X 5 inch dressing by ripping it off my body. After seven days of melding into my chest skin and underarm areas, that sucker was on for the duration. I went back and forth in my mind about would they, or would they not remove that bandage by ripping it off or by prying it off lovingly instead. Either way, I knew that my skin was in for a tough time as the bandage covered a very large amount of skin.

I had also had heard that the drain removal is super painful. I could feel that my drain was into me a good 6 inches, starting underneath my arm and going to the center of my left chest. I had read about both the drain removal and the tape removal on the Internet and had become very nervous about both things. (Note to self: Never read about scary things on the Internet after 3:00 p.m.)

You would think that my mind would be fully on the pathology, instead of these issues, wouldn't you? As it turned out, my surgeon came into the room and ripped that bandage from one side to another in one fell swoop before I even knew what hit me. The pain, though monumental and causing involuntary twitching, lasted only a few minutes. The surgeon who is never one for ceremony, compassion, or even words, took care of THAT issue. One down.

Next, he had me lay down on my back. He artfully distracted me with small talk while fiddling with my drain site. In the next second the stitches were cut and the drain was out with no pain. The man does not fool around. Two down.

I looked down to see what I looked like. Well, for sure my breast is gone and it is not pretty. I have a scar straight across with some skin left for my reconstruction. My friends, I don't know if I can ever get used to what is there now. It is very difficult to see, but there was no other alternative. Even though I don't like it, I have to learn to live with it. I will consider losing a breast one of my great life tragedies, but I traded it for my life and I will always stand by that decision.

Or .... did I trade my breast for my life? Maybe not. What if my cancer had just been a teeny pre-cancer? This was information that we had not known because I had two vastly different pathologies on my June biopsy, one reporting a serious cancer the other a stage 0 pre-cancer. What if I had given my breast up for a teeny pre-cancer? I had been thinking about that and the moment of truth was at hand.

The Doctor pulled out the pathology report and began. As it turns out, my surgery was "curative". Likely no need for radiation or chemo, although I now must go see the Oncologist to confirm this. My tumor was mildly estrogen positive, a condition that requires most women to take Tamoxifen for several years afterwards to control future cancer growth. The tumor itself was bigger than everybody thought. It was also a high-grade comedo type DCIS tumor. This means that it was the bad cancer, and it had been poised to become invasive.

But it didn't. And now it won't. The pathology also showed a proliferation of other calcifications which is how this cancer begins its journey. Think of them as baby pre-cancers, just a twinkle in their mother's eye at this stage, but poised to grow and mature into more cancer.

I had done the right thing after all. I followed my own intuition, fired two surgeons who wouldn't, and endured a third who just didn't care. But I did it. And, I think it's over. Mostly. Hopefully.

Love you all, I do. Jen

www.jenniferbunker.com

Home From the Hospital and Doing Great

Thanks so much to everybody who called, emailed, and brought flowers and cute teddy bears. I don't know what I would have done without my sisterhood through this.

I am back, one boob short of when I left. My family jokes that maybe I lost a pound (due to my famously small breasts). Jeepers, everybody's a comedian!

Like all my hospital stays I had a great experience. What's not to like? Nice nurses bring you warm blankets and keep you from barfing after surgery. They are kind and sweet and even reminded Sara why she once wanted to be a nurse.

I have had literally NO PAIN at all. We don't know why, but I did not need my pain meds in the hospital nor have I needed to take any percoset at home. I am taking 2 Tylenol for swelling and that is it. Why a person would have an 8 inch gash/amputation and not feel pain is beyond me. I have loads of energy and I feel great. I even managed a shower this morning.

My boobless area is bandaged tight. I see the surgeon next Thursday to get that off. That will be a low moment, but was the right choice.

I woke up in the hospital and realized with a start .... I am free of cancer. I won, you dirty bastard! Even if I had to give you a boob to do it!

(Actually, that is hopeful thinking, because we really won't know if the cancer was invasive until the I get the pathology back sometime next week. If it was invasive, we are talking a whole other ballgame. But we'll talk it then, not now. Today, in my mind, I am free of cancer.)

So, here's the details of my surgery, if you are interested. If not, you are done here. :-)

What strong woman doesn't have strong women behind her? Liz and Sara postponed their lives to be with me through 18 doctor's office visits and one mastectomy. They prepared my home before I left, secured any doggies and kitties and made me one heck of a hospital basket of soft comforting goodies. Precious adorable Josh has been checking in when he can even through the excess of estrogen and emotion. He is to be commended for his continued love and support. Love you, son.

I headed off for surgery at 7:15 a.m. on Thursday. With entourage and many pillows in tow, I arrived resigned and ready to get on with it. They checked me in and gave me the world's worst hospital gown along with the poofy hat. I didn't don the hat out of defiance and they let me get away with it, for a while. The girls toddled along behind my bed as I was pushed around the hospital to my various stations. (Note: They push you through the halls where regular people are walking. I would have been mortified to see someone I know!)

My first stop was to have radio active dye injected into my breast. This is done to check the sentinel modes for any cancer. The dye is injected, then you must wait two hours before it makes its way to the nodes. You are totally radioactive and that time, which is worrisome. Once the dye "seeps" to the right place, the surgeon uses a Geiger counter while in surgery to test the nodes. Because this kind of cancer attracts the radiation molecules, if there is cancer in a node, the Geiger counter will find it and then the surgeon removes it. I probably didn't explain that right, but anyway, I waited my two hours with my faithful servants, and finally it was my time for surgery.

I liked my anesthesiologist who listened carefully to my heart issues and made the appropriate notes. A resident who told me he was just finishing up medical school then rolled me into the operating room. On the way, he told me I was going to get the best "margarita" ever and that it would make it so that I just didn't care any more. He was right, I saw the stark white of the operating room and everybody in masks, but I just didn't care. They asked me to move myself to the operating table, which I happily did. Then, the best part ever ... I just went black.

In previous operations I had to play the game ... "Now count backwards from 100 ... here we go ..." That's when you know you are going out and it causes such anxiety in those two seconds before you go. This time, the wonderful med student simply filled my IV with the juice and didn't say anything as he did it. Bless his heart for that.

The surgery took 2 hours and then (for reasons we don't know yet) I was in recovery for two hours longer than we expected. This caused the girls some anxiety as somebody had told them I would be in my room shortly, but I then didn't show up for several hours. However, I woke up feeling fine in the recovery room and and had no pain at all. They wheeled me to my room where my nannies were waiting for me.

I immediately had the best nurse in the world, a guy who asked me if I felt nauseous (I did) and did I need some meds (I did). He took care of my and though I was dozy I noted that he talked at length with my girls and answered their questions. He was kind and sweet and that means a lot.

The rest for me was a lot of napping. Josh visited later that day which is a big deal for him as he hates hospitals. I had low blood pressure issues, 88/50 through the night along with a high heartbeat. It was concerning but the nurses kept a good eye on it all while I dozed. I slept all night long and woke up already to go around 7 a.m. I never saw or talked to my surgeon even though I asked all day long to talk to him. That is how they roll in Utah, and it is kinda sad. But, he did what I hired him to do and I guess that is okay enough.

I have a drain which is such a drag and kinda gross. I will get that out on Thursday. I'm already anxious to go to the nice ladies at the one-boobie-bra store and see what they can fix me up with. I just feel ready to get back to my life.

I need strong prayers that my pathology shows the cancer was not invasive. Then, I need prayers that my insurance will not be any more mean to me than they already have been. Then, I need my clients to call me cause I am ready to get back to work.

Thanks AGAIN, there are no words to describe how much your support means to me and my kids.

Love (the one pound lighter) Jen

www.jenniferbunker.com

Canser is Messy

I've put off blogging for some time now while I pondered a big decision I had to make. When I started my blog, I wanted to be honest and open and it's been really beneficial for me, more so than I originally anticipated actually.

But for a while I just needed to hang back while searching for an answer that truthfully still hasn't come with any real clarity. Normally confident and decisive, I don't know what's been toughest to bear, the decision that I have to make or the indecisiveness that I still feel in making it.

It just goes to show that cancer is messy. There are no clear answers. In the end, I had to trust my gut and instincts in order to move ahead.

So today, after many agonizing days of thought, I decided to have a mastectomy instead of a lumpectomy.

I would equate the difficulty of coming to, and accepting, this decision along the lines of when you have a cherished pet who you decide to put to sleep. You know that you must do it, but there is no peace in the decision, and the days leading up to the final event are filled with what-ifs, a zillion mind changes and second guesses.

Ultimately, I had to choose from two horrible choices. One just happened to be a little less horrible than the other and that is why I chose it.

Cancer is messy. The decisions are agonizingly difficult. The friends are dear. The waiting is torture. But I choose to live and so I do what I do.

My surgery is Thursday the 7th. I am as uneasy and as unsure as I have ever been about anything. I'm not sure which is worse, surgery or the resulting aftermath. But like many people before me, I'll troop into the hospital and do what I have to do. And I know that I chose life.

Cancer is messy.

http://www.jenniferbunker.com/

Living With Cancer: Kris Carr's Story in Scientific American

Kris Carr is featured in Scientific American this month. Click here to see the article. Kris founded the social networking site, "My Crazy Sexy Life" where I have learned immeasurable gems and wisdoms about my health, myself, and my journey.

I believe that the information learned there has likely saved my life.

I would never have found Kris or her site without first getting cancer.

In this regard, having cancer has probably saved my life.

(Hey, that's one of those logic thingies :-)

Paix - Jen

www.jenniferbunker.com

Juicing Queen

The thing about getting cancer and having to wait for many weeks for a diagnosis and prognosis is that it gives you a lot of time to think. And search the Internet. As I have mentioned before, I came across a website which has been my rock throughout this ordeal. When 32-year-old Kris Carr was diagnosed with incurable liver cancer, she started a social networking site called My Crazy Sexy Life for people with cancer and other debilitating diseases to trade information, chat, and educate each other.

And in my case, I learned fast and got a good education. I've learned so much there that it's still hard for me to assimilate it all. However, the one thing that I let sink into my stubborn noggin is that I don't have to sit around and wait for somebody else to do something about my situation. There is a lot I can be doing to reverse my bad health, and then stabilize it for the future.

After researching and encouragement from friends at Kris's site, I bought an Omega 8005 juicer. I've learned that humans can get full protein from living foods (plants) and that ingesting animal products is a direct causative for cancer and many other ailments. I took this information and cross checked it, researched it, and came to the obvious conclusion that eating compassionately is the way our bodies want to eat, were born to eat, and the way to ensure incredible, optimal human health.

Soooo, even though I don't really like vegetables OR fruits I dug in and began to juice. Thankfully my online posse provided endless green juicing and green smoothie recipes, along with other amazing raw recipes. I actually LOVE the juice that I make, and am putting things into it that I would never have eaten otherwise. Vegetables taste different when they are juiced, and not in a bad way!

Here's my typical morning recipe:

1 big cucumber (substitute zucchini if making for Liz)

2 - 4 celery stalks

1 apple

1 lemon

2 leaves kale

2 carrots

hemp protein powder

powdered milk thistle

It is so delicious! It also gives me about a 2-hour buzz in the morning after I drink it. Since I've been juicing (twice daily, then a third vegan meal like potato leek soup and vegan spring rolls) I've lost all of my aches and pains, I no longer retain water, my chronic sinus pain/allergies are gone completely, I am no longer tired with malaise, I no longer use any deodorant (think about it, there's no "smelly" waste this way), I have way more energy, and I am sleeping like a baby. That's a big deal for this chronic insomniac!

Many of the peeps at Kris's site are devoting their lives to this idea of eating compassionately. It certainly isn't a new concept to me. One of my heroes, Liz Bunker, has been a devoted vegetarian for 12 years. She is a roll model and an unbelievable help to me in the journey. She has quietly lived her compassionate beliefs through the most egregious of questions, probing, and downright disapproval from friends, family and strangers. I really could not have made the journey without her.

Here's to a long and "fruitful" life!

Peas - Jen

www.jenniferbunker.com

Have Medical Records Will Travel

Because I haven't have medical insurance for the past 10 years and didn't see the doctor much in that time frame, it has been an interesting journey into how medical care has evolved since I last participated. I am amazed at the new way my surgeon takes my blood pressure, and the way almost everybody takes blood now with a "butterfly". Now if only there was a way to look inside a woman's breast without smashing it. How come we don't have that one handled yet?

Anyway, one of the big disappointments is that medical offices seem to be in constant chaos. I learned early that just because I ask one office to send my records to another office doesn't actually mean that it will be done. If fact, I've learned that it pretty much won't get done.

So, now I arrive to every appointment with my up-to-the-minute medical records file in tow. This file holds every single paper generated from every single visit. I offer each physician the updates and they always happily copy them. This was so odd to me at first, but I realized that if I were to step up and take responsibility for the distribution of my own records, I would be the ultimate winner.

It's interesting to see what they write about me in the files. Each visit offers an assessment of how I "presented" such as, "is pleasant and upbeat", "seems informed and knowledgeable," and there is always mention that I have been "chaperoned" (my girls are with me).

Getting the records is much easier than BI (before insurance). I remember that offices and hospitals wouldn't give you your own records under any circumstances, but instead they would send them directly on to the requesting physician. It's probably because of the things that they said about you that they didn't want you to see. Thanks to new HPPA rules, records must be given to a patient who requests them. I bet physicians are kinder now, knowing that patients will be reading what they wrote about them.

But regardless of what they write, it's kind of comforting knowing that I have my whole file with me and can produce my health situation in its entirety at any moment. Dear friends Lucki and Sandy Latimer recommend a complex filing system that includes dates, notes, and all records held in a single journal. They advised to always bring along another set of ears, eyes, and hands so that second person can take notes enabling the patient to dialog freely.

Good ideas that have served me well so far.

Have a peas-ful day!

Love, Jen

Unbelievably Inspiring

Check out what 10-year-old Mimi Ausland of Bend Oregon has done:

http://www.msnbc.msn.com/id/21134540/vp/25675151#25642902

Visit her website and play the trivia game to donate dog kibble.

AND...


... look at what this family did. Amazing.

http://www.msnbc.msn.com/id/21134540/vp/25675151#25568850

Love ya - Jen

It Was Even Scarier Than Cancer (For a While)

While I'm driving the Gloom and Doom bus, I'll blog about something else that I have found can be even more scarier than cancer.

My insurance company is trying to prove that I applied for insurance with them under fraudulent terms, and then drop me without paying for any of my coverage.

Here's the back story. It has been my good fortune to become acquainted with several individuals who have the inside "know how" on how insurance companies work (one of whom works for and insurance company herself). When I began to sense trouble on my own insurance front, I consulted the bunch of them and here is what they said:

"Insurance companies are in the business of making money. They are not interested in losing money on any patient for any reason. If you are self-employed (as I am) and you have an individual policy (as I do) and you get cancer (as I did) they will move heaven and earth to drop you. This is because you are a lone little nobody without a group to back you therefore making you easy pickings for the kill. People at the insurance company are specially trained to weed out lone cancer patients like you."

In my case, my insurance company has frozen all payments to any of my doctors pending a five year review. According to my friends in the know, this means that the insurance company will closely examine all of my medical records for the past 5 years, and then try to catch me in a lie from my initial application. Not only will they be looking for evidence that I lied about having cancer, but they'll also be looking for any tiny foothold to prove that I lied about anything and then will drop me.

The stories: One lady was dropped by her company after they discovered she had not disclosed a visit to a psychologist. When she asked them how that could have anything to do with her current cancer, they said "You were probably depressed about having cancer." They promptly dropped her from coverage.

Another woman was dropped when the insurance company learned that she had fudged her weight on the initial application by 10 pounds. They declared this "fraud" and dropped her even though it had nothing to do with her cancer.

An third woman was given consent for a cancer surgery by her insurance company and proceeded with it. Afterwards, the company demanded a 5-year-review at which time they rescinded their approval of the procedure, refused to pay for it, and left her holding the $40K bag. Spiffy!

I have no idea what my own status is. Limbo I guess. I get letters in the mail every day explaining that payment is being held pending examination of the records. Sad stuff, huh? I'll keep you posted as the saga unfolds.

Paix - Jen

Five Weeks In; No Game Plan and None in Sight

Saw another surgeon today. He is associated with the hospital in my town and came recommended by the Oncologist that I saw last week. The visit was just so-so, I'll spare you the details. However, when we went to schedule a possible date for surgery ... surprise! My insurance doesn't cover surgery at that hospital.

So, to recap, my insurance covers surgeons who work at the hospital the insurance company doesn't cover, but the insurance doesn't cover any surgeons at the hospital where I can have surgery. How's that for a pretty good racket?

Ah the hilarity. That literally leaves me with absolutely nowhere to go to get this cancer out of me. Five weeks and still no game plan. I have a call into the Cancer Treatment Centers of America, but I am not hopeful.

So, the options are, do nothing and hope for the best. Treat myself with alternative therapies and hope the cancer goes away or at least doesn't spread. Or pay for the surgery myself at my local hospital. (Sure thing! Let me just run and get my checkbook.)

I told my girls afterward that my work has been hanging in limbo for over a month now and that I have to get back to it. I am a self-employed single mom who runs a busy business and who has agents and clients who depend upon me to show up and work everyday. If I don't work, I don't get paid. So, cancer in tow, that's what I'll do for now.

Here's hoping for a better day tomorrow. Jen

Compassion at Long Last

Information and kindness has arrived in the form of Dr. Hanson, white-haired Oncologist at McKay Dee Hospital. He and his wonderful physician's assistant (who's name I actually did not catch) were unbelievably compassionate and actually gave me information that I can use. AND, they treated me like I am a whole person with thoughts and concerns and questions. In the end, the doctor gave me some options and then .... drum roll please .... asked me what *I* wanted to do. What a novel idea!

It seems that it should always be that way, especially with those of us who come armed with mega amounts of knowledge about the whole thing (thank goodness for the Internet) and are ready to have a good decisive discussion about the various options. The relief in my daughters' faces was as close to heaven as I could get.

Unfortunately there is nothing for me to decide yet, because I have still another appointment with another Dr. However, one month after diagnosis, we finally feel we are on our way.