Boobs On Ice™

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.

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.

Prognosis Chart - Treatment Options

I've had a lot of questions lately about treatment so here's a rundown of the options and what's happened so far:

We did not know the size of the tumor on diagnosis, though I saw it on the ultrasound during the diagnosis and during multiple needle biopsies the same day.

The mass never did show up on mammogram and my diagnostic radiologist says he does not think it would have been detected if I had had a mammogram before I could point out what was happening with nipple retraction.

We did know however:

This was invasive lobular breast cancer which does not just form a cluster of cells and stay put. It had not just grown but had clearly begun to invade cells beyond the spot where it started. I had a mastectomy on December 21, 2007 during which all breast tissue was removed on one side. Reconstruction was begun and will be completed in a second surgery on June 18, 2008.

In February 2008 I was cleared by the surgeon to see an oncologist, which I did. What she showed me was this chart. (click on image to get full size)

The top line of the graph shows the typical prognosis for a woman my age, in my current health condition, with my cancer as it was staged at the time of surgery, of the same size and type and with positive estrogen receptors as mine had, and after a mastectomy as I had.

• The green area (good) shows that 42 of the women would be alive AND cancer free in 10 years.
• The red area (bad) shows that 39 of the women would be alive but would have had a recurrence of cancer.
• The blue area shows that 19 of the 100 women would be dead within the ten year period, with the cause something other than cancer (heart attack, stroke, being run over by a bus, falling down the stairs, who knows)

So far so bad.

The next bar shows an additional yellow area illustrating that taking anti-estrogen medication to block the hormones that cause my kind of cancer to grow would increase the number of women alive and without cancer by 17.

That sounds like a good number to me for a treatment that is not invasive and fairly low risk for other problems. Not without risk but reasonable.

The next two bars show the same yellow areas,

• One showing 11 women would have their chances improved by chemotherapy alone with no anti-hormonal medication.

• The last showing that adding a chemotherapy regimen to the anti-hormonal medication would add 7 cancer-free women to the 17 we get by using anti-hormone therapy alone.

My immediate thought - in my shock at the areas of red added to the area of blue (women dead or with cancer again detected) was that I'd do chemotherapy and anti-estrogen therapy.

Some Research Later

Knee-jerk emotional reactions based on shock aside I feel that the hormone therapy alone would give me the best chance of continuing to stay alive yet without decreasing my quality of life in too large a way.

The caveat is this: the analysis was done based on lab exam of the tumor and before the full body nuclear bone scan showed suspicious areas in both spine and thoracic (chest) bones.

So I do need to have more tests done and the bone situation analyzed. That may change the picture.

Right now we're on hold until a multidisciplinary team can be located where I can be assessed and treated as a whole person, not just as a boob without a brain.

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.

Calgon Take Me Away: Pain - Relaxation Resources Needed

After all the excitement (that's a nice word for it) of the last week concerning pain management hurdles and doctors and bone scans and who will see which patients and a getting a second surgery scheduled for June and just yesterday learning that my reconstructive guru is leaving GW for New York at the end of July - insert screaming in frustration here -  I need a break.

How about a nice Downloadable Relaxation/Guided Imagery Session?

I haven't listened to this MP3 but I'm going to right now, I need time and a way to hopefully enhance my pain medication  kicking in. It's not one of the better mornings I've had and I've yet to really do anything - but it would be nice to spend the rest of Saturday with my spouse who will then be doing a corporate retreat for a few days and I'd rather our conversation not be focused on when I last took my pain meds.

It would be nice if not all our time involved him going to appointments with me and dealing with my limitations at home. If I were he I'd need a retreat too. OK, I do need a retreat, lets face it,

In any case, for now relaxation it is - to try to enhance the 2 doses of meds I've had so far today - and this is the one I'm going to check out:

MP3 - reported to be near CD quality, downloads to computer for later listening at your convenience. From The Wellness Community

                    Voice Only (22:00, 10MB)
                    Voice With Music (22:30, 10.3MB)

If you have other suggestions that are free or low cost to everyone - or to special populations - please let us know in the comments. I'm so ready to be taken off to another place, whether it's in my mind or dragging my body along as well.

Need an MP3 player? Get one here: WinAmp (Windows)  QuickTime7

 

Please Help, Nice Cancer Doc

Yesterday Doctor Claudine Isaacs, who had been recommended far and wide as a great oncologist at Georgetown University Hospital was scheduled to review my case. We had been waiting for what seemed like forever to get this done,

She did not want to speak to the patient nor see the patient. My husband the schedule arranger played phone tag with her assistant, and finally got then to agree to see . . .

. . . my records,

It was like cramming for finals and then being told that you can control noting of how the packet looks.

The random departments from random hospitals and different doctors would just send over what was deemed of interest. My primary care doc wrote up her case noted from the last visit, the one during which I broke down saying that I was unable to function with pain and fatigue.

That, we hoped, could push Doctor Isaacs over the edge if there was a doubt.

Then I sat and waited all day, with my friends praying.

After four I got the bad news, Doctor Isaacs declined to take the case.

Big let down.

So twelve hours later I send a personal email to another doctor at Georgetown, This time I told the story, in brief. I pointed out how serious I think my situation could be. I can only hope I did well because I sent it out an hour ago. I doubt I'll get an opportunity to work on it again for extra credit.

Here's what I said -

Dear Doctor L ,

Your patient (who is identified online as @whymommy) speaks so highly of you that I am hoping you will consider taking my case or speaking with me about it.

I was diagnosed with stage 2 invasive lobular carcinoma on December 6, 2007 and on December 21st had a mastectomy (Dr Flax) with reconstruction (Dr Chang/ GW). The lab work showed the tumor to be positive for estrogen receptors and nearly 5cm in size.

Possible metastasis and either stage 3 or 4 breast cancer was indicated by a bone scan done in February showing uptake of material in thoracic region and lower spine.

My case is complicated by overwhelming exhaustion, whether cancer fatigue or years of cancer symptoms of pain and fatigue misdiagnosed as fibromyalgia who can tell but I am totally out of commission and need help desperately.

The bottom line is that it is getting worse by the day and my primary care doctor, Elizabeth Zapp, feels (as I understand it) that it is not within her area of expertise to treat the exhaustion or the severe back and chest pain that is also increasing. So neither pain nor exhaustion are being adequately addressed.

Nor do we have more information on possible metastasis.

In mid February I had one visit with an oncologist whose first action was to show me a chart  with an analysis showing a 19% chance I'd be dead within 10 years of a cause other than cancer, and if I did survive there was a 50/50 chance of having a cancer recurrence - which my surgeon Dr Flax had told me was more like 5%. 

I was stunned, terrified and felt betrayed by my surgeon.

The following week she sent me to have an MRI while my chest expanders were still in place. The lab obviously sent me home, refusing to perform the test. She did not order anything in place of that and when we spoke by phone would not reveal the result of my bone scan also done that month. Nether did she send this report to my Primary Care doctor. It was obviously a bad fit between patient and doctor.

By then my confidence was shaken to the core and I conveyed to her that I would take some time to regroup and rethink. The exhaustion and pain was overwhelming. Since then my husband who has been doing my scheduling, my Primary Care doctor and I have all been unsuccessful in reaching the right person who could get me seen.

It was only on Friday May 9 that I learned the result of the suspicious bone scan after my primary care, Doctor Zapp called the oncologist and eventually got a report that she shared with me.

Having a possible explanation for this chest and back pain is like a gift and a curse,

I can't keep on without treating at least the pain if not possible spread of disease. And I need your help dealing with what to do next. Doing nothing is not acceptable.

We had been waiting to see if Dr Isaacs would see me, as she was recommended by my Diagnostic Radiologist and Doctor Zapp. On Tuesday May 13 she turned down my case and I started investigating in earnest on my own.

After speaking with (@whymommy) again tonight about her care and your approach, I am asking  Doctor Isaacs to send my file to you with the hope that you will review it and meet with me to suggest a course of action, or in a best case scenario, accept me as a patient.

Thank you as well for taking the time to read this. It was a hard letter to write and to trust my ability to put my situation into words. I'm not sure anyone could do so.

I welcome the opportunity to speak with you at your earliest convenience and would so very much appreciate any time you could give me. My cel phone is xxxxxxxx and I will keep it on and glued to me until I hear from you. And of course you can reach me at this email address.

Again, thank you for your time, and what you've done for (@whymommy).

Sincelely

Susan Reynolds

- and of course if it could possible do any good to be an activist in this situation I thought it was ok to admit it, so I added - - -

Talks about reality in - Boobs on Ice - a blog about breast cancer
Co-founder, Board Member: Frozen Pea Fund, we will not appease cancer

1474 Northpoint Village Ctr #314 Reston Virginia 20194
Writes & Consults about new ways to build commnity and connections
twitter at http://twitter.com/susanreynolds

---
Who knows if I should have said any of what I said - for who knows what she's looking for in new patients and whats the best way to get youreslf kicked to the curb. But I'm desparate like I said and so why not just be honest and tell it like it is - like I did.

The next stop is - well I dont even know where but I dont go much further without someone to take charge

The Non Super-Powered Cancer Patient

"I think that the people surrounding a person living with cancer often need that person to be a superhero. They don't want to see you frightened, or sad, or depressed.

I try to deal with these expectations as best I can, even if it means that I no longer see some people, the most extreme way of dealing with them."

@ Jeanne Sather 2006 in: The Assertive Cancer Patient

About a year ago I was befriended on twitter by a group of close friends which seemed to take me under their wing. The word seems is the operative one here because this friendship only worked for them if things went in accordance with their belief systems.

One thing that was frowned on was admitting physical disability in anything other than a "fun way". As one of them said: "You'll never get a contract if you let anyone know you're sick. You have to pretend to be healthy and wealthy. Never worried about anything"

But Frankly

Even before my cancer diagnosis in December 2007, healthy was a stretch for me to pull off so that didn't fly. After some episodes of be being frank about this they departed from my support system  en-mass about six weeks after I got cancer. And I mean that literally. Within a week all were unsubscribed from my twitter, blog, you name it. One, a very prominent tweeter even dropped and blocked me on facebook without a word.

They clearly believe what they say and live their lives with FUN being the motto. And they are accurate reflections of much of the "real world" where being our real self is seems tantamount to admitting we are  worthless pieces of humanity holding a gun at the ready just to rid the world of ourselves - when in reality we're communicating a real story - without flowers and hearts and pink tennis skirts.

Because let's face it, some of us are not able to go canoing or golfing, bar-hopping or walking for that matter. It's not doom and gloom it's just reality!

This is put on a happy face thing not an unusual phenomenon. In families mothers who are getting more and more ill continue to do their multi-faceted jobs long after the children should be helping by putting dishes in the dishwasher, mixing lemonade, folding clothes and walking dogs.

The people around us can put their heads in the sand as long as we pretend we're "able".

But are we doing them any favors?

Are we doing neighbors any favors if we don't tell them we'd be glad to have them bring in dinner once a week as respite for our families? Are we doing our online friends any favors when we put on a mantle of "tough it out?"

Jeanne Sather is right though and people don't want to see us frightened, or sad, or depressed.

For the record I'm not depressed or sad so much at this point as I am frustrated and sometimes overwhelmed. Then there is pain and fatigue. That's still not under control. Some days pain is worse. But most days fatigue has me decked. Literally.

Some don't like to see that. Others dislike reality in general. But unfortunately that's what I've got.

Representing the situation as anything else seems like a lie to me.

Not to mention that it would also discount all the great stuff my twitter and blogging friends do for me, and my 22 year old daughter who has put her life on hold, is living at home and on whose shoulders falls most of the everyday "stuff." She even represents me at live events I can't get to.

I've learned to stop pretending there's nothing wrong

No longer interacting with some people as Jeanne suggests is an option. I guess education is another. But that's harder to do with some than many others. I'm lucky to mainly have friends and readers to whom I can tell the truth.

Like you.

Bone Scan Land and Metastatic Cancer

The report from my bone scan made it's way to me last week by way of a casual conversation with my primary care doc who called to see how I was feeling. While we talked she said she'd heard from the oncologist I saw once and abandoned.

Turns out she'd also gotten my bone scan report. Of course I promptly pushed to get results and she's pretty straightforward with me. It's a good relationship and I appreciate her candor.

That's about the last of the good news for now.

Turns out that two area of bone are either deteriorating (some of that could be age) or the breast cancer has metastasized and started growing in one or both areas. That sounds like a bad news / worse news option. For some reason the bone has some areas significant enough to warrant concern.

It doesn't come as a shock so much as it's a blow that I hoped to avoid for awhile.  Invasive lobular breast cancer isn't known for staying put but I'd hoped I could finish reconstruction, try to get some help with the overwhelming exhaustion, and work with the Frozen Pea Fund on increasing knowledge about cancer and funding some worthwhile projects for a few years before tackling my next round of questionable news.

On the other hand it explains the pain in both chest and lower back that I've been blaming on chest wall expansion and a back injury from my teen years.

Unfortunately I'm stuck not knowing more until I can get an MRI. That can't happen until the chest wall expanders come out. They contain metal and that's a no-no for going through the MRI machine unless I want to chance them being magnetized right through my chest wall. No one wants blood on the MRI machine apparently.

So when my second surgery is done, expanders out, new boob built, I'll see how quickly I can finagle a spot in the MRI tube so we can perhaps find out what's happening in the bones.

My next appointment with Doctor Chang at George Washington is on Friday to discuss surgery he thought should be the first week in June after the current expansion has time to rest a bit. I'm going to try to jar him lose from that estimate and hope to move it up at least a week - maybe more. I'd like to be able to get going on diagnostics.

In the meantime I'm reading up on treatment for breast cancer that has moved to bones. My reading reinforces what my understanding that it does not then become bone cancer, but in fact remains cancerous breast cells but moved on to a new host and growing in bone, taking over where bone cells should be.

Sometimes we need a shove to get us - OK me at least - to move off Start to  Action.

So while I'm at it, getting a clear diagnosis is also time to think about stabilizing the bones in my lower back. Whether it's because of cancer or deterioration its a lot more painful to stand in the past couple of years. And something there has to get fixed no matter the cause.

The injury in my teens means that issue is something I've been dealing with for about forty years but the pain and immobility has been increasing in the past seven or eight and severely limiting in the last two or three.

I'm taking it pretty well. Not sure how the family is except in waiting mode. If you weren't along on Gone Nuclear - Full Body Bone Scan Day you can go back in time via this video, or check some of the links to learn more about various topics. being informed is not a bad thing.

• Metastatic Cancer: Q&A - National Cancer Institute
•  Merck Manual - Everything You Need To Know About Cancer -
  this has wonderful detail but is a very layman friendly guide

and if you're still reading after that, delve into interesting possibilities

• Scientists Investigate Treatments for Breast Cancer That Has Spread to the Bone
• Sloan-Kettering - Molecules Can Block Breast Cancer's Ability to Spread to Lungs and Bone

 

 

Breast Reconstruction Process: Halftime

If you've never heard much about breast reconstruction following mastectomy you may believe that  surgeons just remove cancerous breast tissue and replace it with a breast shaped form, sew up the skin, and you're good to go.

Not quite.

Clicking on this image will show an enlarged illustration of how the chest wall is stretched - in a series of  weekly or bi-weekly expansion procedures with the surgeon on an outpatient basis - to create a new pocket in which a breast form is placed in a second surgery.

I have one, perhaps two, more expansions before the pocket is large enough to accept the form. The last expansion will be followed by a couple weeks of rest for the chest wall. Then comes  surgery to remove the expander and replace it with the breast form. I am hoping to schedule surgery before the end of May.

So far I'm at four months and counting, though some of the feet dragging was absolutely my issue with decision making and needing reassurance. I admit it has been painful and I've had many doubts along the way.

Below is a video done after my visit with the surgeon a little over a week ago in which my chest muscle tissue was further stretched. It will hopefully give you a little more personal slant.

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