Boobs On Ice™

Doctors Patients Friends and Strangers

If you want your dollars to go directly to cancer research, one option is to give directly to an event that raises more money than any other athletic fundraising event in the country and in 2007 donated 100% of every rider-raised dollar directly to cancer research and treatment at Dana-Farber Cancer Institute in Boston.

Over 200 riders in The Pan-Massachusetts Challenge, the nation’s original fundraising bike-a-thon, are cancer survivors. Thousands of riders and volunteers have lost loved ones to the disease. Still more ride in honor of those in treatment.

The PMC has contributed more than $200 million to lifesaving cancer research and treatment at Dana-Farber Cancer Institute since its 1980 inception.

My friend Doug Haslam is a rider who needs your support. he rides in a pure spirit of generosity, saying

"Any physical hardship that we face in trying to complete the ride will always pale in comparison to what people face in fighting cancer."

Doctors, patients, friends and strangers join in this race as teammates, riding for a unified goal. I hope you'll help them. If everyone who reads this gave just ONE Dollar Doug would be well on his way to his goal. And perhaps cancer might even be conquered in my lifetime.

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.

The Inheritance of Regina Brett

 

Regina Brett talks about breast cancer

 

Would you want to know?

Would you want to know if you carried a gene for a potentially fatal disease?

If you found out you had that gene, would you want your child to know if she carried it, too?

It's a terrible legacy to pass on. A mutation in every single cell
of your body. I have one. It's called BRCA1. It's one of the breast
cancer genes.

There are so many traits I want to pass on to my daughter. A gene for a fatal disease isn't one of them.

Ten years ago, I wrote four columns after being diagnosed with
breast cancer. Today I present four columns about what my daughter
inherited from me. These were far more difficult to write.

Our story begins with a test.

• Part 1: The test
• Part 2: The choice
• Part 3: The surgery
• Part 4: The victory
• Epilogue: The final word Has your family been touched by breast cancer? Share your stories in the comments area below.

The Inheritance - Regina Brett, Plain Dealer Columnist

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!))

MyFax Piggybacks on Pink: Links One Dollar Donation to Cancer for New Accounts

In the Good News: Bad News department, a note from Marie Grimaldi let me know that Ottawa-based MyFax, one of the leading Internet fax providers, has agreed to donate $1 to the Canadian Caner Society for every new MyFax account opened between now and June 20.

The money going to a good cause, and I applaud the effort to go green w/ paperless faxing since according to Energy Star, fax machines are one of the most energy-intensive pieces of equipment in your office. The energy vampires constantly draw power because they need to be available at any hour to receive a fax.

But what is sad is that MyFax folks chose not to donate the cost of even one month's service fee when a new user signs up. In my view, donating a dollar when the fee to users will be anything between $120 and $500 the first year is insulting to the cancer community and frankly a disappointment. I not only think they can do better; I think we should expect better.

At least at first blush, piggybacking a sales effort to the whole pink marketing of the cancer machine makes me suspicious of a company's true nature. In an odd twist it seems as if they are less than the generous community-aware folks they'd like to look like. And a dollar donation is shameful.

What do YOU think? Tell me why I'm wrong. Are they a poor startup starved for cash and with a tiny profit margin? I might agree with you if that's the case. What are other good reasons the dollar fee is so low?

Caring for Little Serenity Burns

When I feel like a washed out dishrag I try to think about Phil Burns' tiny two year old daughter, Serenity who's just 2 weeks into a very sudden and life-threatening diagnosis of Leukemia. Serenity can't analyze what's happening, or try to understand why everything hurts like I can when bad stuff happens to me.

Another way cancer is different for me is that my husband's insurance pays for much of my care. Phil's not in the same position, so one of the first things that friends did is to set up a chip-in account to help cover some of the mounting expenses.

Chemotherapy, antibiotics, hospitals, anti-nausea drugs and all the other things involved in taking care of a very sick little girl is expensive.

If you can help in any way, large or small, please do. Your kindness will be appreciated not just by Phil and his wife Adria but by all of us in the cancer community. The love you show one of us you show the others as well.

To simply put Serenity’s ChipIn Widget on your blog or website requires very little effort and will help publicize the cause. If you click on this link: you'll be able to get the code for a widget and also get help on putting it wherever you'd like. 

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.

DCA the Tiny Cancer Killer

“If there were a magic bullet, ... it might be something like  DCA…”  Newsweek, January 23, 2007   

DCA is a tiny molecule, odorless, colorless, inexpensive, relatively non-toxic and researchers including Evangelos Michelakis MD at the University of Alberta think it may soon become an effective treatment for many forms of cancer.

Michelakis, a professor at Alberta has shown that dichloroacetate (DCA) causes regression in several cancers, including lung, breast, and brain tumors.

Crossing borders

Alberta's program fosters research that crosses the boundaries of traditional disciplines and brings scientific research to the clinical treatment of cancer. 

Which brings us back to DCA, which has been used for decades to treat children with metabolism malfunction due to mitochondrial diseases.

As a kind of aside, mitochondria, the energy producing units in cells, have been connected with cancer since the 1930s, when researchers first noticed that these organelles dysfunction when cancer is present.

BUT until recently, it was believed that cancer-affected mitochondria are permanently damaged because of, not the cause of, the cancer.  Michelakis wondered about this and began testing DCA,which activates a critical enzyme as a way to "revive" cancer-affected mitochondria.

The results astounded him

Michelakis and his colleagues found that DCA caused the mitochondrias to start functioning again in many cancers, showing that the way they worked was suppressed by the cancer but not permanently damaged by it.

More importantly, they found that there was a drastic cut in tumor growth both in test tubes and in animals. And DCA, unlike most current chemotherapies, did not have any effects on normal, non-cancerous tissues.