Boobs On Ice™

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.

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!))

The Doctor Who Will Not Take You as a Patient Will See You In June

There's both a lot and really only a little to update - the good news is that something will happen in June. Thanks to sharing what was happening with Allyson Kapin from Women Who Tech who'd told me her sister's experience at Georgetown it gave me an opportunity to think through where I am.

So here it is

Suddenly Georgetown at least seems interested in providing what looks on paper at least like a good intitial screening. WHY and how did they suddenly decide they want to do this? I don't know.

Considering that both Oncologists that I wanted to see have declined to take this case it's amazing that the latest I've contacted now has faxed an Rx for CT scans of multiple areas - which I've looked at and the order seem to be very comprehensive.

Dr Liu want test results before I meet with her sometime in June. As she told me before - this meeting is just to give her recommendations and to pass me on to the newest oncologist because Liu has a full practice. I'm glad to do the testing and get at least ONE opinion on my options - especially to take a step forward and to get some answers that the testing may give us.

My plan: to flat out ask about concerns

First: I need someone who is eager to take on and solve complex problems. This is not a simple case as I see it.

Second: Is cancer spread to bone or elsewhere responsible for symptoms I've been having that I was blaming on other things? Which symptoms are caused by other chronic illness and which are caused by cancer? Is creative treatment based on unique needs something Georgetown does well or is it a case of: "we give you standard treatment for breast cancer after mastectomy."

Third: The proposed doctor they were referring me to was one whose interest was in cancer prevention. She is not a specialist in any of my challenges. That just seems so naive that it alone almost makes me hesitant to commit to Georgetown as a treatment facility.

Fourth: Will care be comprehensive; decisions made by an oncologist, orthopedist, neurologist, cardiologist, psychologist etc or would that be only a special case or if a special need arose?

Since managed care insurance makes it difficult to get hospitals to involve multiple specialists unless that is their standard of care, how will this affect me? I accept that I'm not dealing with M.D. Anderson Cancer Center but how close to that standard can they come?  Since I had a TIA last August and other chronic illness I need to know that my cancer care is not going to make other problems worse.

Fifth: What's their approach to pain management? Does this mean yet another Doctor to try to get in to see? How would they immediately improve my pain situation?

Sixth: Will they go to bat for the care they want with my insurance company or simply fold to guidelines?

Do or die

If I don't get good answers I'll supposedly keep meeting with docs until I either do or die. The only problem with this is that the clock is ticking and I'm not having the anti-hormone treatment that looks on paper to give me the best shot at beating any recurrence that hasn't already begun.

Will that be Georgetown's recommended treatment? Will Liu agree with the prognosis which will change obviously for the worse if the bone scans do turn out to indicate even more cancer? All more questions.

At least right now some things are clear

1. I'll do multiple CT scans and xrays at Sibley Hospital in DC Thurs May 29,
2. I'll meet Liu at Georgetown around June 12th to go over tests and be passed off to someone else if they can convince me to do so
3. I'll try to see if I can see Wells at Hopkins with the results of the CT scans and other bone results I'll have after I meet with Liu.
4. On the 18th at George Washington U Hospital I'll have my second breast surgery with Doctor Chang - this time cleaning out the expansion capsule and adding a breast form on one side in the pocket created in my chest wall and then have the other breast matched to the new and improved model. And yes, again I go home with drains in place.
   
5. And talk about something to get ballistic about, this is only allowed as a 23 hour hospitalization by my insurance company just like my mastectomy was. No, I'm not ballistic, just really makes me sad that there would be a standard of care so low.
   

Goals

At the end of surgery I'd like to recuperate knowing for the most part what I'm facing as far as other therapy. I'm not sure that's possible, but I can hope.

Sitting around on a rock on the coast of Nova Scotia for the Month of August would be nice too. I just don't see that happening either.

The Role of Emotional Support in Cancer Therapy

"health care providers acknowledge the role of emotional support in the treatment of pediatric cancer, and go out of their way to meet the needs of those patients.

Emotional support is presumably just as important in the treatment of adults, but there is much less of a focus on it from health care providers.

The hospital where I work is arguably the best in the country, having a strong integrative medicine program in addition to a commitment to scientific research. I know the patients here are having their emotional needs met to a greater degree than anywhere else in the country.

What I am concerned about it the lack of emphasis this aspect of treatment is getting elsewhere."

Link: Dr. Miggy 5.0

 

Learn more about providing for patient needs:

• How to Help A Friend With Cancer - Seattle Cancer Care Alliance
• relief for a neglected area of cancer care: the emotional turmoil caused by the diagnosis, symptoms and treatment of cancer
• Mundane household chores tackled by Cacer helpers
• Cancer Coaches to help patients navigate a maze of choices and chaos of decisions

Update: Just the Facts

Readers are so supportive and I owe you big time. And OK, fine, I may not be able to accomplish a "just the facts" entry but I'm way behind updating and there have been developments in the past week so here are some highlights.

• Pain control: a little better since last Thursday when GP, Doctor Zapp decided I'm obviously not getting into see either an oncologist or a physiatrist anytime soon. (No not a psychiatrist, this is a doctor who specializes in musculoskeletal conditions including pain and the "overall" patient). So Dr Z bumped my meds up to a very conservative pain drug that is helping a bit.

• Oncologists - Ha. See Doctor Doctor Give Me the News where we learn that all Georgetown Oncologists at the Lombardi Center are too busy to take me as a patient, except the new one whose interest is listed as preventing cancer. I think that horse has left the barn and she's taken the wrong job.

• "But one Lombardi Doctor did say she'd SEE you right?" Yes but only to discuss the case, and see if I like the Georgetown system. Her secretary will call me but I'm not holding my breath.

• I got many suggestions after the Please Help letter, in fact one was a referral to Shawna Willey who's not just a doctor but also the head of the Betty Oursman Center, which is really another part of the Georgetown University Hospital's Madhouse on the Potomac. Only problem was that when I called they no idea why I was calling, so the referral turned out to be more like a suggestion. Since the other Georgetown Doctors had my file upstairs already this one went nowhere. I appreciate the thoughts and all the nice suggestions but either Georgetown is totally disorganized or they weren't really expecting my call.

• Katie Paine, survivor and cheerleader, keeps threatening to abscond with me to Dana Farber Cancer Center in Boston and I seriously considered grabbing my records, begging a series of rooms for a couple of nights from the Boston techie and new media community and actually going until I did some digging and found out that Blue Cross or whatever they are calling themselves around the DC area now is not paying for Dana Farber.

• Now researching other local doctors not associated with Georgetown or George Washington. Johns Hopkins is a possibility since from the far western exurbs of DC it's about two hours away in Baltimore give or take and traffic willing. I keep seeing the name Kristy Weber connected to breast cancer and an interest in its willingness to spread to bone, and she's at Hopkins. We shall see.

• I DID see my friend the reconstructive surgeon Dr Chang from George Washington on Friday. We're set for surgery on both breasts on June 18th. One will be brand new with the expander removed and the capsule cleaned out (ouch) and replaced with an implant. And the other will be reduced and reshaped to match my smaller younger cleavage, or as I call it, new and improved boobage.

• My insurance will pay for a 23 hour hospital stay. Did you hear that? Not an overnight stay - 23 hours. For surgery on two breasts. In a sixty year old woman, This means I'll go home with two drains in place which I will yet again have to deal with measuring and emptying. And this is not - let me stress - elective surgery. Heads should roll. Don't even start me. I wonder how much a whole night costs? Should I pass the hat in lieu of even having insurance?

• And I did tell him about the bone scan and how my primary doc was the one to get the report about it, slipped in with notes from the one visit to the abandoned oncologist.  Attempting to discourage my worry about what the heck it is, he will do his best to get me seen my an oncologist at George Washington but stresses repeatedly that he does not think that I will like the system at all and would prefer a more "suburban" setting. Oh this should be good if he's warning me about it in advance.

• Then he dropped the bomb that he's leaving GW at the end of July and going to New York. This being dissed by doctors is getting out of hand. I'm kidding. I like him. I think he likes me. We're good.

• Tomorrow first thing I do is call my friend George's internist. I need reinforcements on the pain control and bone issues. Then I call Dr Zapp to give her the updates. And I need to schedule an eye exam. Not to mention a head exam.

To Sum Up

Nobody available to look at bone scan results from February that show something going on in my thoracic bones and spine.

Pain relief so-so but better. 

Fatigue improved since pain relief improved.

Drive-thru for new boobage on June 18th. 

Going home two days too soon.

Then reconstructive guru leaving me for the big city.

Still looking for oncologist team - stressing team, not lone wolf.

I HATE doctor shopping. I want a team of docs who all work together and tell each other what the heck they are planning. But since it's not 1960 anymore I guess that's out.

Otherwise things are great. And I am ordering that 18 month red planner from Moleskine. Maybe two. That will guarantee at least three more years of this kind of fun.

Doctor, Doctor, Give Me The News

Putting off things has been easy to do since Friday which was mucho doctor day. Lots of thinking and decisions were involved, but just doing something to take a step forward felt good so I had a fair amount of energy.

Yesterday - the day after doctor day - I was worn out and spent the day napping and doing not much else; not even getting dressed. There was much to write about but I kept putting off tackling it.

Tonight I found myself looking first for pocket planners and then adding various luscious moleskines to my Amazon gift list - something I almost never do even if there's an occasion coming up.

When things progressed to the point of reading about a paper animation of a cow doing something - who knows, mooing I guess - it was clear I had to write since obviously I was going nuts. Window shopping for pretty red planners is one thing but cows on a box with a crank means I'm frittering away time.

So back to Friday it is

What woke me up was a call from Doctor Liu from Georgetown, to whom I had written the "dear doctor" letter. She was sorry she had not contacted me earlier; she was out of the office. And she was sorry but she has a full practice.

Sigh. I thanked her for calling.

She said that Georgetown does not generally take patients that have been treated elsewhere. I didn't really let that sink in because I was busy explaining that I'd never really been treated, just had one visit with an oncologist who turned out to be a bad fit.

Looking back on it now it seems a very odd thing to say. Or a bad policy to have. Perhaps I misheard.

In any case, she repeated that she had a full practice and suggested the same new associate that Doctor Isaacs suggested on Tuesday. I expressed that I needed someone with broader experience but would consider seeing the associate as part of a team which would be able to provide more comprehensive care. Not really addressing that, she agreed that we could discuss my case in person and then she would refer me to the new associate if I liked what she could tell me about "the Georgetown System."

Um . .

Not really happy yet, I mentioned possible bone involvement and concern that I needed someone with experience with metastasis to bone. There was no real answer. She said she would speak with her secretary about setting up a time to see me to talk in person. When she gets to the office she should have my records.

I guess I should take a look at what it says to know what the doctors are basing their decisions on.

But that's how Friday started. This was before getting to George Washington to see my friend the art lover and reconstructive surgeon Dr Chang.

So - I'm another week down the road

Am I beginning to see a theme with Georgetown? Let's be positive, Doctor Liu was very sweet on the phone. She DID phone me personally, and eventually I will at least have spoken to someone there, in person, and will form my own conclusion about whether it would be workable for me.

It's hard not to let desperation to be treated by someone - anyone - cloud my decision making. In the meantime, what's going on inside my body?

I know, I know - in any case, I will meet Dr Liu - hopefully sometime relatively soon - and I will learn more about how the system works - at least at Georgetown.

Still it looks as if the new associate gets essentially all the new cases, not necessarily the right doctor for the right patient.

But that's just my take on things and I have been wrong before. That said, I'm not giving up on needing a half dozen eighteen month planners from moleskin.