Boobs On Ice™

The Guts to Play Hurt

Penn State's football coach Joe Paterno says there's a difference between his players being hurt and being injured. Just looking at the sheer numbers of young people he sees come through his program in a year I figure he's witnessed both injured and hurt far more than most of us.

In other words, being stupid is never smart but persevering through tough times builds character and shows that not all goals get cast aside just because of personal comfort.

Hurt or Injured?

I'm not so sure I know the difference anymore. Cancer is not so easy to classify. It's just the cherry on the top of a number of years of declining health. I'm not injured, but I'm pretty well banged up and I'm not so much interested in playing.

Today I'm spending the day in bed, and that is, I'll admit, not so unusual anymore. What started out as being uncomfortable or in pain in the days surrounding my biopsy and surgeries has somehow changed over the past ten months to the point that I don't feel like I'm fit company for man nor beast.

The failed implant coming so soon after complications from a second surgery maybe was the turning point for me, or maybe it was just one more thing along the road that brought me to where I am. Add my dramatic reaction to the anti-tumor meds I started three weeks ago and it's just a really unattractive picture.

If this is a phase I'm ready for it to be over.

Flashback in time: As a naturally protective mom it was hard but I knew the importance of teaching my son to keep playing in the last third of a soccer game even when cramping muscles and feeling winded made him give me the "Mom, I'm dying" look. If the girls twisted a wrist in gymnastics, dance or softball, an ace bandage and some ice might be in order but the performance went on. Because character and commitment matter.

But I apparently didn't get the memo that it also works the other way and I need to just keep on keeping on as well. The last time I had dinner with someone outside my immediate family: March 2008. The last time I had lunch with someone outside my immediate family: August. It's not cancer that has turned me into a hermit. It's my reactions to it that have done the job. Today I just say "no" to invitations.

Could it be just too hard to face "normal?"

I can talk the talk but apparently I can't walk the walk.  My mom's been gone a long time and she was never much of a cheerleader anyhow. Is it fair to ask my own kids to turn the tables and drag me out? To make me keep on keeping on?

That's a hard burden to put on their shoulders. So I don't.  Besides, the eldest has not spoken to me in years, the second is tied up in her own life, the third is based across the country with a new wife, and the fourth has been stuck with being at home to play stand-in for the others during the past year. That's enough pressure for any one person, so expecting her to also be my cheerleader / coach / harassement officer is just not right.

While on one hand I'm glad my children are not young enough to have to deal with this when they can't understand it, I wonder if they can ever understand at any age? I wonder if it would be easier to be forced to get out of bed because they would at least need me if this had happened ten or fifteen years ago. But I don't have any of the answers.

Moms are supposed to know everything. Guess what; we don't.

I don't know how people who face uncertain futures and daily pain deal with months, years, decades. Is there a handbook some of us are lucky enough to have gotten ahead of time? Are some of us just tougher or better or smarter? I've got a lot to learn and I only hope I can do so gracefully.

As I wait for this phase to pass - or whatever happens next to just happen - I wonder how many other cancer patients have the same kinds of reactions. How many even acknowledge that these feelings exist? How many have courage to jump into everything they do with both feet and how many take the easier path of stepping back from "normal?"

There's good news though.

I'm not crying today. Not yelling at people nor overmedicating. I'm not oversleeping, drinking nor overeating. But it remains that I'm hurting and treading water.

I just keep thinking that if there's one thing I've learned it's that this too shall pass.

Or maybe I need JoePa to whip me into shape. Somehow, I don't think this malaise, disconnect, or whatever it is would fly at Joe's house.

Waiting For Oncology Gods

It would be an understatement to say I didn't expect much from the appointment. But my reconstructive surgeon wanted me to see this one more oncologist. He worked with one who he talked with about my case. So back in June I had promised him I would meet his colleague.

My faith was pretty shaken. What could be more disheartening than my last experience with one of the  oncology gods?

So a little after ten AM this morning I walked into the familiar doctor's office building at George Washington University hospital, holding my husband's hand for reassurance.  I can't tell you I had anything but reservations.

The space the Hematology and Oncology department has seems darker and is more cramped than the one I'm used to a few floors above. There's no teak, mahogany or brass in sight. One desk area sits beside a rolling clothes rack of freshly laundered lab coats in an area carved out of the hallway and on it the computer monitor looms, looking like it was made in 1992.

In a waiting area no larger than a smallish apartment bedroom, patients sat as if waiting for bad news but hoping for the best.

No one was alone. One was with his friend, another was a mother daughter pair. There were three husbands accompanying wives, ages ranging from fifty up a decade or two; it's hard sometimes to tell age with cancer patients.

As we waited, husband grumbling about doctors not keeping their appointments timely, me - when I wasn't popping up for a continuing stream of water to quench an unquenchable thirst - lecturing on doctors that had to deal with difficult diseases, a white coat caught my eye outside the lab. Discussing a woman's blood work with her son, there was something notable in his manner with the young man who was asking questions. They moved a few feet into the hall and leaned towards each other, looks of concern on both faces. 

It was an oddly reassuring moment amid the quiet. Could this be more than just another stop along the way for me? Maybe there were oncologists that did not treat all cancer patients like pegs to be fit into neat round holes.

Nevertheless, I reassured my husband that I wasn't too emotionally invested in this doctor being "the one". He said he'd failed to see the name tag on the doctor we'd seen in conversation.

There are seven or eight of them in the group at GW; who knows who this random stranger was?

OK - I reiterated - if this appointment was a bust I was on my way to Hopkins. My heart would not be broken.

But I didn't need to worry.

I've found my pragmatic oncologist. One who does not think he has all the answers. But if there are problems we'll work around them.

And he told me to email him.

The guy in the hallway.

Sold.

Speaking in Future Tense

"My death from cancer doesn't appear imminent. But I know I won't be able to do some of the things I want to. For one thing, my body has been pretty beat up. I'm just not physically up to it.

"When I find myself thinking two, or three, or even more years ahead, am I being silly? Feeling the phantom pain of a future that's no longer there"

Leroy Sievers wrote this about what may not be the worst pain of the cancer disease and treatment saga.

Although it's not the worst pain, getting used to what we can't do anymore and changing our ideas about ourselves and the future is difficult. It's not being maudlin or not thinking positively or being depressed or morose to admit the truth. And we each find our way to adapt. Or we don't and are miserable.

OK, maybe we remain a little miserable anyway.

But I'm working on adapting to what I can do in the here and now. And I'm thinking of what next year, and the next, could be like given the limitations I'm given.

It's really not so horrible; but it's a little sad. A bit like potential lost or a lover that leaves us. Things will never be the same. They can be good - but not the same. And greiving for that can be healthy, though painful.

Granted I won't have the exact future I envisioned as an eighty year old with a big house full of grandkids coming and going that my grandmother had - unless they're coming to bring meals to Nana.

I can't handle a big house and that's a fact. So thinking small and neat is smart and a way to be pleased with each day instead of frustrated. Somehow, no matter how I wrap my head around it I can't think of denial as superior to practical realism.

One ex-friend called my approach "negative energy" and wrote my daughter that she needed to protect herself from it. I was hurt - but it is what it is and we each live in our own reality.

That I'm allowed to know a little more about my future in advance and prepare mentally for it is part of mine. I look forward to happy times. Realistic, but happy.

I count myself lucky in that regard.

A Few Hours of Normal

This year my #3 daughter, the one lucky enough to still be at home, so the one who's able to experience ME on a daily basis, will be away from home the day I go through the ritual of putting on my red shirt and plopping down in front of the TV accompanied with lots of trash talk about the Ohio Buckeyes season. It's no secret that she's relieved.

She puts up with football because I love football. Otherwise, not even the idea that - hey: these guys are wearing tight pants - really does it for her.

She has no interest in who Colt Brennan's coach was at Hawaii, what the Mountain West league is doing, or how odd Favre looks in a Jets helmet.

And this year I expect no startling transformation. Nothing will really change about football days at my house. Not even Ohio Buckeye football days. The only difference will be inside my brain.

Last year I spent the opening weekend of the NFL season in the hospital because of a stroke and rounded the season out with surgery for breast cancer.

No matter what we claim, or how we talk the happy talk, experiences like that change the way people think and feel and react. There's a little niggle in the back of my mind about an odd sensation, or a follow up, or if what I'm snacking on has plant estrogens in it. So this year every football game I watch will be an excuse to quietly celebrate an hour or two of "normal."

For just a little while I'll just be a fan watching a game. OK, a fan watching a game and trash talk twittering.

The Day After

I remember Thursday - kind of. I was supposed to go home. It had been a hell of a day - and a night - and another day with neither sleep nor a handle on pain control.

There was no clock. It made it hard to place what was happening when and just how unlike the plan this recuperation was.

While I grappled with total inability to sleep (think escape), the doctors grappled with the unknown: the mysterious source of the excruciating pain in my breastbone . . . not connected in any obvious way to my breast surgery itself.

In pre-op pain wasn't an issue and in post-op I reported it as a 10.5 on a scale from 1 to 10. Wednesday night a resident on call was called multiple times by the nurses, but never responded.

I was in bad shape

It's hard to treat what you don't understand granted but from a patient's point of view it's hard to cope with what you don't understand. A suddenly fractured sternum Is what I'd feared we had. More than one doctor suggested heart issues. Only one suspected some Gastrointestinal issue. Nobody mentioned the word cancer.

All I cared was that somebody had to find out what was going on behind the pain. Instead what we found out was how to manage it.

After there was "something off" about an EKG, a second one was asked for. Both were inconclusive yet different from a pre-surgical chart.

The cardiac resident went to talk to her boss about something heart related while the surgical resident suggested an upper GI issue but that wasn't perused. The cardiac guy never did show up when he was supposed to follow up two days in a row.  I never got an explanation of that either.

An IV pump arrived after a full day. I got to push a little button for on-demand delivery of a new pain medication, then another.

To demonstrate how serious my symptoms were I opted for a big needle in my backside rather than wait the required time for the medication that was being used unsuccessfully to keep my stomach contents - jello and water - in place.

Writing a week later I understand that this was not the pain I was supposed to be feeling, nor the panic. But at the time it was both overwhelming and terrifying. Worse; I don't know what could have been done to keep it from happening.

Looking up

Things are better now. I can't say I'm normal but I'm at the point I thought I'd be last Friday (two days after surgery) but it's been over a week.

The rest of the days following surgery run like an old flickering movie in my mind now. But the problem with the movie is that during some periods - maybe those of most intense pain perhaps - there are gaps. My daughter tells me things I've supposedly heard before. They're new to me.

Having the energy and intellect for Monk and Psych rerun marathons and not much else. I'm declaring the rest of the month vegetating time because face it, I'm planted here for the duration.

A Little Post-Surgical Glitch

Someone needs to remind me that I'm seriously old. I didn't take that into account to the degree I should have.

Five days ago my surgery took longer than anticipated. Then non-cancer related complications meant that my hospital stay was an extended one. I didn't sleep for two days and had barf on my glasses on and off for three - could have been more.

Wondering a few weeks ago if I would do this rebuilding process again, I now have my answer. There's not a chance I would unless I were much younger. And I'm not.

I thought I was prepared

The aftermath of my mastectomy was mild compared to the pain from complications this time. Or maybe it's that this is my second major surgery in six months. Or I'm just too old to have done this.

When I've had time to forget this one perhaps I'll feel differently. If the brand new specialists I'll be working with on these new issues perform miracles or if other symptoms clear up tomorrow and I am left to treat only the swollen black and blue green and purple left breast . . . probably still a no.

Peas Aren't Doing It For Me This Time

Count me out for fun stuff I'd hoped to do later this month.  Because for now the count is at Breast Pain = 7.5 Complication Pain 9.5

And I've learned to never discount that there may be something you'd never heard of that could hit when you were looking elsewhere.

Less Boobage Awaits

It's 3:30 AM and I leave at 9AM for the hospital. It could be that I'm a little nervous.

Most everyone knows that I'm  going in for surgery and that it will complete this phase of the rebuilding of my breast after it was removed because of a sudden cancer diagnosis in December 2007 but I haven't said much beyond that.

The process of having a balloon surgically inserted inside the muscle wall to expand it, then gradually injected with saline every few weeks was a laborious one but it was the safest for me given my health history. It involved frequent drives into DC for visits to the office of my surgeon and getting to know some really nice staff at George Washington Hospital faculty medical building. I'll take photos with them next time I see them since It's been a memorable journey and you should meet them.

So tomorrow around noon I get wheeled in to have my chest muscle expander removed and Doctor Chang will then clean out the  capsule and a semi-permanent implant will be added to that pocket created within the chest wall. My other breast will be reduced in size to match the new implant. (I won't even start on the story about nipples.)

Looking for a silver lining I look forward to having 40 year old breasts instead of 60 year old breasts. I'd like to hope for 20 but that's too much to ask in the best case. I can tease Doctor Chang that  I'll be expecting perky but that's as far as that goes.

Since he will be leaving George Washington University for New York at the end of July I am very glad that I will be able to complete this process with the surgeon, Raymond Chang, in whom I have faith and with whom I have developed a good relationship since we first met in December.

His advice has been caring and tailored to my situation. I've never felt pressure to do things his way and I appreciate that immensely.  He's handled my moments of doubt with calm and reassurance, always focusing on what my feelings and needs were.

And I did have doubts. Vacillating between complete removal of the second breast for prophylactic reasons to lessen the chance of recurrence, having no reconstruction at all, opting for a different type implant; I was all over the place. There were many moments of doubt. Well - being truthful, there were days and weeks of doubt.

But Doctor Chang was always interested in my feelings and even the rest of my cancer treatment including what my reactions to oncologists and other doctors were. And when I was at my most vulnerable he was at his most understanding and helpful, showing a genuine effort to not be the cold surgeon but to emphasize that all women are different, have different needs and reactions; he encouraged me to be patient and understanding with myself.

I'd be lying if I said I wasn't apprehensive. I've not had surgery at George Washington before and don't know the system, the rooms, the process. And this time I'll have drains on both breasts - double the pain. I don't know if my husband can spend the night like he did at Sibley and Reston Hospitals. This time I'll have two sore arms and two sides of my chest painful for the week or two after surgery. Dealing with fatigue has been a problem already and I can't imagine that this will make it better. And pain control has been an ongoing issue.

I try not to think that they could possibly find another cancer when they're in there doing their thing. But it does pop up into my mind. More than that I know that another surgery means being out of commission even further and makes more work for my number three daughter who remains my caretaker, nutritionist, sounding board, and who's been forced into the role of private-duty nurse and go-fer.

Then there's the issue of a whole new anatomy to get used to. If there is a change or thickening in the newly shaped breast tissue will I be able to identify it? I don't know.

I anticipate coming home Thursday. But I'll probably do a lot of sleeping even through the weekend and hope I can get daughter #2 to come over and relieve little sister a couple of times during that time. The good news is that this is the last surgery for awhile, knock on wood, and the rest of the family should be able to get back to a relatively normal life soon.

Meanwhile I try to figure out what I'm doing with hormone therapy - and where. . .  and if I think that lab results  from bone scan, CT scan and x-rays interpreted as "no clear evidence of cancer" should merit another look-see by someone more curious and thorough.

What can you, my readers and friends do? Don't hesitate to offer to kidnap me for dinner or lunch, coffee or drinks in a week or so. Yes a meal delivered - no soy - would be grand or a gift certificate for a restaurant that delivers or does pickup might just be the right thing to have. Other options are books on tape. Or I  could just go stir crazy and need someone to spring me, get me out of the house. Thinking about it, it's more likely that Kate aka twitterer Badwolf will need to be sprung on her own - to a movie or a bar just to talk and  to vent like anyone who'd been cooped up with me for weeks would need to.

I'm just looking forward. Only a few more days wearing bras is something to look forward to.

What's the Difference Between God and A Doctor?

The punch line to that joke is "God does not think he's a doctor." I heard it last week and it's pretty apropos here.

Wednesday June 4th was my appointment at Georgetown with second of the Lombardi docs who I had asked to take my case. I guess I went into it hoping for more than I should.

Setting the stage for this visit my mind was a mass of questions and my family doctor felt that the case was complex enough that a comprehensive cancer clinic was the place to go for answers. She suggested Georgetown’s Lombardi Cancer Center and now after two months of trying to get seen there I was just a few hours away from my appointment as I started writing about the impending visit.

It was 3:30 AM Wednesday morning and I was awake in spite of taking an ambien at 11:30 and a valium at 1AM.

My mind was swirling with the questions of a curious sick person.

• What do my symptoms have to do with pain in my breast then other areas that I thought were fibromyalgia?  Were many of them cancer symptoms all the while? My reading via well respected cancer websites seems to indicate they might be. Neither my surgeon nor my GP thought that these ideas were out of the question.

There were funky areas in a bone scan;

• did the intense sternum and spine/hip pain I had dismissed as something else mean the cancer has spread to bone or is something else is wrong? How would this impact completing reconstruction on the removed breast and reduction on the other at George Washington University Hospital this coming Wednesday?  Has cancer spread somewhere else? Is it responsible for new symptoms and old symptoms or just new ones - or none.

• How might my heart problems and a small stroke diagnosed in late summer 2007 tie into the picture and how they might affect my treatment options? I‘d read about the concerns with some therapies so which applied to me?

• Did any of my issues have anything to do with the unknown lymph system problems that landed me in the hospital in isolation at age 12 and persisted for over a decade? Does being allergic to everything play a part?

I was uneasy but hopeful about how this doctor would suggest I proceed. I wondered if Georgetown has a comprehensive team that deals with complex medical histories. In order to make sure I understood what the recommendations would be and what a program of treatment would entail I enlisted my husband Bill and daughter Kate to accompany me. Both were super in assisting me to clarify questions and providing moral support.

I did in one way get answers

And indeed I was seen. The bad news is that none of these questions were really addressed in a way I felt was helpful. Some I never brought up when it was clear that this was not a match made in heaven.

Within minutes after Doctor Liu entered the examining room with an assortment of four residents, fellows and nurses in tow I had been dismissed in more ways than one.

She stayed a few minutes, conveyed what shed decided to convey then exited without wishing me well and without shaking hands as she left. While I hope the Residents don't learn that this was the way one treats patients, there’s a lot I learned from the visit:

A.) Doctor Liu stated that cancer has nothing to do with other physical problems. She made it very clear in her answers and in her tone that she treats cancer as an entity without a comprehensive approach. How the whole person reacts to the disease or their current physical health is not really her concern.

B.) She believes that breast cancer, when removed, is “in some petri dish somewhere” thus unable to cause any symptoms, in spite of mountains of evidence to the contrary that has turned up from everyplace from NIH to UCLA to MD Anderson.

C.) From her examination of tests she says there is “No evidence that the cancer has spread” to the bone but these areas should be closely followed. When asked how she knew this she said “I’ve seen the x-rays” Period. She gave no explanation for why I was having such serious rib pain or what questionable areas on the bone scan were other than possible degenerative changes. This is not cancer related - end of story and without asking any questions of me about symptoms, why I felt they were related, etc.

D.) Although she does not like charts and statistics she strongly implied that I was foolish for going ahead with surgery to finally finish my breast reconstruction this week, rattling off options for various forms of chemotherapy but using initials to discuss regimens and neither slowing down to seriously discuss the merits of each nor giving a hand-out of the options nor discernible justification for her rationale that chemotherapy was the wise choice other than an implied “because I say so” (not her words - but her attitude)

E.) Her dismissal of the relationship of trust between my surgeon Doctor Chang and me, and my desire that he complete my surgery before he left GW in July was disrespectful to both him and to me.

F.) She disagreed with Doctor Kaltman’s use of statistics and percentage of risk as well as her view that Aromatase inhibitors rather than Tamoxifen would be the right choice for hormone therapy, and expressed this in a fairly dismissive tone.

G.) “We know everything about Tamoxifen there is to know”  pretty much sums up her end of much of the conversation.

H.) When asked at the very end what she thought my next step should be given that I was unwilling to cancel surgery in less than a week she mentioned Doctor Kaltman. It’s clear she prefers I have my cancer treated pretty much anyplace other than at Georgetown but she covered her bases and saw me with plenty of witnesses present. End of story.

I.) Her view is that if have pain since it has nothing to do with cancer (back to items A. and B.) a rheumatologist needs to address that. But she is too busy to coordinate any cancer treatment with the treatment of any other doctor. She told me bluntly that it is my job to find specialists in multiple other areas and coordinate care among them.

So I’m left with the questions I walked in the door with . . . and others.

If a teaching hospital is not where one goes for helping get to the bottom of  my questions who could possibly tackle the combination of cancer, osteo-arthritic and immune system and other glitches? 

It is possible that there are answers to any of this in any cancer center? Maybe not. Doctor Liu reinforced my growing fear that there simply ARE no answers and the problems are too daunting to attempt to find solutions for.  But I keep believing in the possibility.

There’s good news too though.

I left without one question occupying any place in my mind. There is no doubt that Georgetown could never help me find the answers I seek - even the most basic ones. 

My favorite analogy again surfaces as it does regularly in my life: Many times we find ourselves in front of what looks like a bowl of spaghetti. Each single strand not easily identifiable as individual challenges and not easy to separate from one another, much less find one end or another.

Six months post diagnosis I know it’s only the beginning of many years with no guarantees and no easy answers.

But this really is good news in a way. I know Georgetown is not for me and i know what kind of doctor - and what kind of approach - is not workable in this situation and for this patient. For every door that closes another opens.

In the meantime

What I need to do now is get through the week.

• Monday more testing at George Washington in preparation for surgery.
• Tuesday rest and tie up loose ends.
• Wednesday removal of the tissue expander in my chest wall and insertion of a  breast form in the pocket created by the tissue expander plus reduction of the other breast to more or less match the reconstruction.
• Thursday discharge from hospital if all goes well; returning home to put mounds of bags of frozen peas on my chest.
• Friday lots of sleep, measuring drainage tube output, and more peas.
• The following seven to ten days of much the same.

Doing my best to keep positive even though answers are few and far between, I’ll tackle the next steps when this incline has leveled off to a nice plateau. if we lose power or I'm disconnected from the net during my recovery period I may threaten to jump out the window. Instead I'll probably check into a hotel.

--

And that's the end of that.

However before Georgetown complains about my characterization of this event: I was very impressed with the rest of the staff of the Lombardi center, from the intake to the last interaction before leaving the facility: the lab technician, who I found both charming and skilled.

I was treated well at every point of the process except for the meeting with Doctor Liu with which I was very disappointed.

This is my opinion only and represents how I experienced this meeting. How Doctor Liu or anyone else experienced it or interprets it I'm unable to say and has no bearings on my case.

No harm and if we all behave like adults all ahould go well for Me, Doctor Liu and Georgetown (taught my my favorites, the Jesuits - - well, unless one counts the Paulists (HI Father Frank!))

Being Tested; The Reactive Cancer Patient

I’ve put off writing about me for awhile. It’s easier to talk about potential cures or treatments or research than reality. A day of testing last Thursday started not so great and ended worse.

The bad reaction to the contrast material that I took via mouth and by IV for the CT scan started the ball rolling and took the next three days to approach being back to normal. There was great broiling bubbling and rejection from my digestive system, lasting well into Sunday. It was like sitting on the stove set on slow simmer.

It was all I could do to go from bathroom to bed, and back again, but I made few forays out to do this and that with my family, an odd display of bravado and stupidity.

That’s before my immune system took over and the skin eruptions and itching began. Maybe my body really does not want to be diagnosed. Sometimes my mind joins the body in that camp.

Such a shame that all this time was wasted sleeping, sick to my stomach, sleeping, in the bathroom, while I’d intended to be doing research for my upcoming visit to Georgetown which I hope will be - or might be - the place that provides the answers to my questions.

I like research because it gives me a feeling as if I can control at least something abut this disease: it’s knowledge.

Maybe the hardest part is not just not knowing what’s happening but having no control. And feeling in control is a big part of positive outcomes in cancer. Understanding the control issues is one of the hard parts makes me more sure I need to add control to my life.

I've given up more control in the past ten years than I thought possible. Taking stock of things I can control is appropriate now. If I can just get some guidance on global issues of treatment I'd feel a lit more in control though.

Perhaps tomorrow  at Georgetown I'll get a sense of what's possible to do.  I understand this doc is too busy to treat me. But she's supposed to be smart. Maybe she's the one to help me put the pieces together.  One can pray.

The Great Unknown - Facing Fears

When Eden Spodek wrote about her long ordeal in a healthy woman's battle with breast cancer she was extremely brave. And I surmise that she was brave through the whole experience.

It sounded like me in my forties; A part of me that's gone missing. For example although I knew most of Eden's story in advance, when I read it I cried. I gave her some feedback, then cried again. I sobbed when I pushed the publish button and again when I read it to my family.

I'm not generally a crier. Instead I'm more likely to just take action. Jump in. Fix something. Offer something. DO something!

But she was so brave. I'm so disappointed with myself by comparison these days.

All week I've been trying to figure out what's really at the core of this fear that's increasing daily to the point that it's overtaken me and nearly frozen me in place.

Back in December when I get that sudden diagnosis of invasive breast cancer that had already grown, I was very matter of fact. I went through the testing at that time with my pragmatic self intact.

An odd blend of self- deprecating black humor and perkyness seemed to be a good defense.

But over the past five months much of my authentic self seems to have ebbed away and my veneer worn thin.

My husband any youngest daughter have provided sounding boards and care whenever I asked something of them - and even when I didn't. She cooks, shops, runs errands, and does the nurturing part of the job. He cleans, works, makes appointments for me and goes to most, then goes back and works some more before coming home to play listening board to my concerns.

Why can't I be brave and strong with all that support?

Searching for clues, tonight at http://www.breastcancer.org I read a question from a woman who admitted to having a high level of fear about her cancer experience.  Rosalind Kleban MSW, Administrative Supervisor for psychosocial programs at Memorial Sloan-Kettering Cancer Center's Lauder Breast Center in New York City told the patient:

"you are doing brave things—taking care of yourself and doing things that need to be done. It's always amazing to me how wonderful breast cancer patients look. That just covers what they're experiencing within—the terror, uncertainty, fear—how they are really feeling."

I'm not so sure this applies to me. Oh sure, I'm doing some of the things I need to do. I've been looking for a doctor who was on my wave length and so far the progress is that:

• My mastectomy has healed and my chest wall gradually expanded.
• I now have one partially rebuilt breast and one intact breast that will be "matched" in a double surgery that has been moved up to June 11th. The end of that road is in sight.

• On the other hand a bone scan reveals that cancer may have spread and could be responsible for pain I'm feeling in a number of other areas.
• These will be screened tomorrow with CT scans and X-rays.
  

• I'm meeting with an oncologist on June 5th to go over new CT scans and X-rays test results as well as pathology reports and tests from December and January..

But most of that has been guided my husband's appointment making skills. Behind the progress I'm beginning to come apart at the seams and the uncertainty and terror is starting to show. It's not the CT scan, or the IV contrast and bariuum coctail that I fear.

Beyond the tests is the great unknown

So perhaps it's really about the long schlog just to get to this point. And the waiting. Perhaps it's about more strangers and even more doctors. Then add in putting my trust in each person on a medical staff will assure that their part of the process is done and done correctly.

It could be the myriad of possibilities that await, or even resenting putting on a positive face. And the responsibility of educating myself and the family so that we can consider options of what to do no matter how things turn out.

In the end

The wearing away of my pragmatic, chipper, upbeat
self is getting on my nerves. If I was my kid, I'd be tempted to give me/them a swift smack on the tushie and tell them to lose the tone.