Boobs On Ice™

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

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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

 

 

Might Validation Help the Exhausted?

Caring for every patient to the best of our abilities does not mean sweeping under the carpet the symptom listed most troublesome by the majority of cancer patients in this country.

There's something that over half of us say is worse than the pain of cancer and treatment and recovery.

And by that I mean that yes, most cancer patients rank fatigue as a symptom more bothersome than pain.

How stunning is that?

But do you ever hear about that? There's something to simply being heard; to not being discounted. In an online issue of a journal: the Oncologist devoted to cancer-related fatigue, dated 2003 (one article you can download below) you'll find articles that make a strong plea for acknowledgment that for cancer patients fatigue is real.

2003. That's Five years ago.

Oncologists knew - or should have known - that they should be telling us it was part of cancer to feel beyond tired, beyond fatigue, and that they don't really know all that much about why it happens or what to do about it.

It wasn't simply having someone acknowledge that fatigue is a part of the cancer experience that helped me accept that I wasn't nuts, but reading what Doctor Jane Poulson said of her own cancer exhaustion at least let me say "finally!"

And one writer in the journal article makes the case that It's worse if you feel isolated in fatigue:            

"What a comfort there would have been, however, in knowing that my exhaustion was being monitored, was being taken seriously....

"I was doing my utmost--a healthy diet, meditation, counseling, as much exercise as I could manage, and lots more besides--to cope with my fatigue. I needed to know that my exhaustion wasn’t the result of a want of imagination or some other lack in me or my attitude.....

"I didn't need to hear of 'sleep hygiene' with its pejorative implications. Nor did I need pills or potions to block out the experience. I knew I needed to feel it all fully, if I were to grow through it, to turn it to my advantage. I knew I had healing resources within myself if I could just push through the fatigue to access them. What I needed was to be held safely in that place." 

Maureen Gilbert. A Survivor's Journey: One Woman's Experience with Cancer-Related Fatigue The Oncologist, 2003

Unlike Maureen, I'm not fine with feeling it fully

I'm done with the "it's just something I'll have to go through" period of acceptance. Now I'm getting mad.  So to hell with feeling it fully. In fact I've had five months to feel it - and some years before that when we didn't know what the symptoms were from. I'm beyond ready to walk out the other side of exhaustion - or to be dragged there through some miracle of modern medicine.

Not only do I believe that it's necessary for this overwhelming symptom to be recognized and brought clearly into the light of day; it's just plain time to do something about it. Recognizing it and acknowledging it is certainly the first step.

If you're a patient:

Be assured that we understand you are beyond exhaustion, that it is real we encourage you to insist to your doctor that it's a serious part of your cancer experience. If the first one doesn't do something pro-active to try to help, see another doctor. No platitudes, no sympathy, and no telling you to tough it out is going to help you feel better.

If you're a friend or relative of someone with cancer 

Please know that their symptom is not something that a nap can simply take care of, whether their doctor gets that or not. Help them find a medical professional who is able to think outside the box. Let's face it; they are likely just too worn down to do this themselves.

In the end discounting cancer exhaustion makes it worse for the person experiencing it, for those around them who are baffled by it, and for the goal of reducing the impact of the disease in every way possible.

I'm not shutting up about until somebody hears these thousands of voices repeating the same words.

I just want to feel enough energy to get out of bed to make dinner without needing a nap after doing 5 minutes of it! I'm not demanding that I be able to walk from the car to the metro train to have drinks with friends. Or push my granddaughter on the swings. Or fly to a conference with my husband. I just want to get up and go to the grocery store for bread.

This lack of knowledge about cancer exhaustion is simply not acceptable in the United States in 2008.

Related reading:

• Download: Download cancerfatigue.pdf
• Doctor Poulson: We're Not Just Tired
• Cancer Fatigue: it Feels Like Death

 

Fatigue Fighting or Fishing in My Wallet?

I hate it when I run across something that sounds too good to be true. But today I came across a photo of Lance Armstrong talking about something called FRS healthy energy.

Coming equipped as I do with a well developed skeptic gene, I don't buy cure-alls or miracle supplements. So I wouldn't pay any attention here except the material says FRS was originally tested and refined by Harvard's "Dana Farber Cancer Institute as a fatigue fighting and general health drink."

And studies - they've at least got some numbers to back them up.

Would I be just as well off keeping up with my fruit and grain and protein awareness program? I have no idea, but the exhaustion is not going anywhere and it's getting old.

Right off the bat since they are dealing with my primary complaint and use two respected names, Dana Farber Clinic, and Lance Armstrong in the promotional materials, I cant get away from feeling that I'm going to need to know more about this.

Remember - I don't look for anything like nutrition to kill cancer cells. But IF there is anything I can do to increase my energy level, I'm so there. Missing events because I'm too wiped out to get out of bed is not my idea of acceptable.

Got ideas for me? Comment away; I'm reading, Or napping maybe, but hopefully reading,