Oh the humanity! The profundity of blog neglect!

Between not having wonderfully reassuring news, or not feeling up to writing about any that I did have, I have not earned my keep as a blogger...oh wait, I'm not getting paid.

But I am sorry if I have worried anyone during my most dramatic blog vacuum....I will make a concerted effort to keep you all better informed. I think I let the blog entry that I would have had to write (to make up

for the missing month) grow so huge and time-consuming in my mind that the very immensity of it became a further deterrent to reactivating the blog. So as to not scare myself away, I'll try to keep up with smaller entries, and not worry about saying anything profound, entertaining, or changing the world from my laptop.

What finally prompted me to write was my growing shame of not making the whole blog-reading world aware, in the midst of this season of giving thanks-- of how THANKFUL I AM for all of you-- my family, my friends, my colleagues-- who let me know that you care. A silver lining, if I had to pick one from this experience...would be the bringing-into-the-light of how many kind people of good character that I have been gifted with finding in my life.......and that they like me, l'il ol' me.... (I feel like Sally Fields...)

Some folks along the way have also told me that I can be, at times, very direct, that I always seem very confident, and even intimidating! (and most of the time I am not feeling that way....) The real truth is that I am quite a squishy softie inside, and conflict and criticism affect me deeply. Some days the best way I can reassure myself that I am a worthy person is that all you good people are my friends and care about me.. and as you all are a great bunch that I hold in high regard, I must occasionally be doing some things right, as I muddle through this life... because of the people I befriend along the way.

Most touching recent expression of concern and support for me:

My nephew Jack wore pink laces in his football shoes during his championship game, just like all the NFL players wore various pink items...gloves, hats, etc. during October (Breast Cancer Awareness Month). My 11 year old nephew is aware, and he loves me. He doesn't even care if his friends see me in the glory of my baldness when they come over. He just introduces me and moves right along, he is such a great kid! These things are the silver linings extraordinaire.

And more to come!

Potatoes, shots, and valuable health.

Human again! Taking a bit longer to bounce back from the chemoas the doses add up. It is so good to wake up and actual feel normal. And to have an appetite! I was truly hungry for the first time in a while, and I went to Whole Foods an bought Lots of Expensive Food. And then I ate too much, which is not a good idea either, but it felt so good! I had cravings for unexpected things. Like I just wanted potatoes. Potatoes. The golden Yukon buttery kind in chunks and boiled with butter, salt and pepper. Yum. Who knew. And coconut sorbet.

Currently I am minding the farm alone, the family is off for a long weekend in Orlando. I have become the dogs' mama. They follow me everywhere, sit in the chair/couch I am sitting in, and they have mightily tried to come in my bedroom and jump in the bed, but I draw the line there. I would come out of the bedroom and they would be just sitting there waiting for me. I had to bring up their little beds so that they would sleep outside the bedroom and stop trying to sneak in. I would hear little feet and their dogtags and turn on the light.Maggie or Teddy would act shocked that they had been caught, and would slink away after repeatedly being told OUT! They do wear you down, they just want to BE with you. But I can't have an itchy bedroom.

Also getting a look at the medical bills. This is another aspect of being on the "other side" for me. I don't see the bills generated by the care I help deliver; I bill for the services but the rest of it, and the hospital bill part, happens totally separately, and I have to admit I like it this way. I know NICU care is very expensive; but it is enough to keep up with the knowledge and practice in the field. The business part of it definitely never interested me, and the billing part of it is something I must do to justify my position.

So I noted with interest the cost of one of the drugs I get every 2 weeks. In fact, it is the drug that allows me to get treated every two weeks instead of every three weeks. A serious rate-limiting side effect to many chemotherapy regimens is the drop in the white blood cell count, which increases the risk of developing serious infections from almost anything including exotic infections. A drug called pegfilgrastim is a growth factor for white blood cells, and is given as an injection the day after chemotherapy. So, it not only prevents the WBC from getting very low, it also permits the chemo to be given at shorter intervals, called "dose-dense" chemotherapy. These shorter intervals enable the chemo to hit the just barely-recovering fast growing cells when they are more vulnerable in the cell growth cycle, and has been shown to have improved outcomes. Yay! And only available since 2002. This is how fast medicine is changing, exponentially fast.

But, the price tag? $7000.00 a shot!

Now, I am fortunate enough to have medical insurance and the resources, but you can see how this would change the life of someone without insurance completely. And have to make choices. And maybe use up life savings to get the best care. Or go bankrupt. But, the drug costs that much to develop and test. And it turns out that it is cost effective too--one intensive care serious infection hospitalization costs about 50K.

So the answer is...the care is expensive because the care is REALLY GOOD. Better drugs, care, treatment options, outcomes....more expensive. But Americans don't want to pay more for the improved and constantly improving standard of care. I'm not sure people really understand how incredible the care available to us really is. I really don't know what the answers are, but I have seen what's available in most of the world, where you're lucky if the water is clean. The hospital in Uganda where I worked for 3 weeks, a major hospital, ran out of paper one day. The WATER didn't work one day.

Excellent health care costs excellent money. So are we as a society going to accept different standards-of-care based on ability to pay? This would result in stratified outcome measures (% cancer survival, life expectancy, newborn mortality rates)--based on socioeconomic status. That would be a repugnant situation indeed. It is not the kind of society I want to live in. Go to a poverty-stricken 3rd world country and see it for yourself, the poor and sick basically linger outside the hospital begging for help. Clearly there are cost-saving measures to be identified and implemented (duplication, inefficiencies, etc.) that can and will be put in place to decrease the cost of health care, but as a population becomes healthier and lives longer because of better medicine and technology, it will cost more. How will we pay for accessibility to standard excellent state-of- the-art care for Americans? I think we will have to get used to thinking differently about the chunk of our own budget that must go to pay for all of it. And we should be expect to be paying more if they can zap your mother's brain tumor with a gamma-knife laser, or transplant a liver into your little girl, or inject a new drug into grandpa's eyes to prevent a common type of blindness in the elderly, or operate on an unborn baby to correct a birth defect before birth, or have the CDC swoop in to figure out what the hell is going on with the next SARS or Ebola or the next mutant virus to infect humans and wreak havoc, or save your life in a horrible car crash where you are helicoptered from the scene and are on the operating table in less than one hour, or build a bone cell scaffold to implant in a degenerating spine so that your own cells can support a new structure, ad infinitum. This is not cheap. We must get used to paying dearly for our valuable health. And be grateful that it is available to us.

How to solve this problem, I am not smart enough and I never took accounting (clearly). But the citizens of this country cannot have high expectations for the personal availability of the best care in the world, and still expect to pay a relatively mediocre, static, grudging fee.

Halfway Done!

Currently getting my fourth dose of chemo, that is halfway done!

Can I get a what-what for the nurses and doctors here at the East Cooper Medical Center Clinic, located less than 10 minutes from my house, of the Medical University of South Carolina. This is a clinical office and infusion center setting, just for taking care of patients. Here I get the benefits of cutting edge academia combined with a smaller, more personal setting away from the hustle and bustle of a busy academic hospital center. I know all the nurses, and see the same doctor when I come on every other Wednesday for chemo.

Don't get me wrong, I am also grateful for the medical center downtown, and have benefited greatly from the diversity of expertise there as well at the hospital and the Hollings Cancer Center. But if feels a bit more homey and personal here in Mount Pleasant if all is going well.

Otherwise, enjoying the GREAT SEASON so far for the Ravens! We actually have an offense this year. Really! And the GREAT SEASON that Jack's team is having- only one loss and a BIG game tonight! And then, playoffs......this is a pic of Jack last year, I can't believe the intensity in this little guy. He absolutely loves the game!

Delay In Updates Due To....

Well the Breast Cancer Treatment Wheel of Fortune spun; apparently someone asked for a vowel and the answer was immediately obvious: D-I-V-E-R-T-I-C-U-L-I-T-I-S. Which involves a lot of abdominal pain and other stuff. Fortunately this was a brief overnight stay in the hospital. With pain under control, and another slew of medicines, they sent me home. Over the next few days, I started feeling better just in time for Chemo Dose #3 YAYYYY! So here I am. Looking sooo forward to the Ravens/Steelers game tomorrow, there will undoubtedly be blood on the field. And these Philly fans I'm staying with want to see what happens with Donovan McNabb coming back to Philly and Michael Vick, but with the Redskins--great games to relax to. I am hanging in there!

Now I Know

--What I look like without hair. It it impossible to imagine. I even thought about finding an app that would do it automatically with a pic, or photoshopping one of mine, but never got around to it. I'm getting used to it--it would have looked better years ago I think. But we always think that, hair or not, I guess. In the middle of one particularly dismaying hair loss moment, my almost 9 year old niece softly told me with her big blue eyes, "What always matters is what's inside. And what's inside is beautiful." Unprompted. Seriously. And that is why I am Down in Dixieland.

After a couple days, I went and got it all taken off, otherwise you REALLY look like a "cancer patient". Bethy's hairdresser offered to help me at her last appointment when she found out I would be staying with her. She has done this in the past with clients and their families and friends. She stayed late, after her last appointment, out of concern for my privacy, although I did not ask for that. She was so kind and upbeat, and she wouldn't take a cent for the service, saying it was her way to give, and that the way to pay her was to get better. She has 3 aunts with breast cancer.

When I came down the stairs wearing the scarf that Bethy bought me, my 11 year old nephew Jack yelled "DOO-RAG!!" and pumped his fist. I was also told I had the Little Steven (in the E Street Band) look going. Talk about a cheering section!

Also noteworthy is the phenomenon of how your head affects how hot or cold you feel. Draft on your head, chilly. Sun on head, hot. Amazing. What they tell you about losing heat faster through your head is true. There is a lot of blood flow up there, at least on good days, recently demonstrated by my forehead-to-iron-railing force experiment in May. Which is healed, with a scar that I can see well now, having previously disappeared into my hairline! Observation of life with a scientific eye, its what keeps a true nerd happy.

Interesting also was the close association (Sept. 19th) with the Official Talk Like a Pirate Day. Was this a mere coincidence? HARRR. I'm not sure.

http://www.talklikeapirate.com/piratehome.html

2 rounds chemo done, 6 to go!

The Strong Stuff

This is one of the medicines, doxorubicin, of the strong type that I received for the second time yesterday. Here is what it looks like in the vial, and going into a vein through the tubing. Hence its name "The Red Devil" by some of the patients who have been treated with it. This moniker is also derived from its wide variety of side effects , which the doctors try their best to control with other medicines. But, the same mechanisms that make it a very good cancer cell killer work on other rapidly dividing cells in the body, so one has to take the good with the bad. Strong medicine, strong effects, and always better side effect medicines and cancer cell drugs becoming available. It is amazing, the amount of work that has been done. And the benefits of science-based medicine, and the benefits of the scientific method. Here is how it works:

Doxorubicin is known to interact with DNA by intercalation and inhibition of macromolecular biosynthesis.This inhibits the progression of the enzyme topoisomerase II, which unwinds DNA for transcription. Doxorubicin stabilizes this topoisomerase enzyme after it has broken the DNA chain for replication, preventing the DNA double helix from being resealed and thereby stopping the process of replication.

Translation: See the picture. The red molecules inserts itself into areas of DNA that is being unwound for gene decoding and translation into protein molecules. This essentially prevents the cell from building the proteins that it needs and from copying the DNA molecule for replication and eventually cell division. The most rapidly growing cells in our body, like CANCER cells, hair-growing cells, cells in our GI tract, and cells in our bone marrow (producing white blood cells to fight infection, red blood cells to carry oxygen, and platelet cells for clotting) ALL take a hit and are knocked out. That is why we lose our hair, have nausea, vomiting, mouth sores, lack of appetite, and sometimes need platelet or blood transfusions (these levels are monitored each time I get chemo). The point is: THE CANCER CELLS ARE RAPIDLY GROWING AND GET KNOCKED OUT TOO. And just when they are thinking about recovering, well WE HIT 'EM AGAIN, THE BASTARDS. And valiantly try to manage all the side effects. This type of drug is a CYTOCIDE, a CELL KILLER. And I hope it is doing its job very well. It is only one of two drugs I am getting now (every two weeks) then I start with one additional drug which has a very interesting story. Really, you say......Really! Yes more excitement to come!

And just in case you wanted some more exciting scientific insight--

HERE IS THE MOLECULAR STRUCTURE!! That sneaky molecule. (My dad seems to like it :))

Hanging in there, hello to all.

Better Stuff for the Soul.

Burning controversies are not good for the soul, nor, it turns out, a gas fireplace. Anyway, more important are the recent words of Imam Feisal Abdul Rauf, in what is finally a high profile, reasoned, moderate opinion calling for a rejection of extremism in Islam. And he is apparently a Giants Fan.

http://www.cnn.com/2010/US/09/13/new.york.imam/index.html?hpt=T2

Also turns out, walking happy doggies Maggie and Teddy on the beach is very good for the soul, and forehead sunburn. And auto-pedicure! Trying to fend off the spectre of chemo on Wednesday. Doing great.

BTW

Please pass this on, join me if you think it worthy.

Book Burning Called For!!

My reverence for all books, stories, and pages bound, leads me to become nauseated at the thought of any burning of books. HOWEVER, the power of words is essentially the power of IDEAS, and in fact is not bound along with the material paper and ink.

The wondrous thing about the USA is that ideas are allowed to flourish because of the freedoms explicitly, in words so carefully chosen, and brilliantly codified in the First Amendment of our Constitution. Despite our National Archives best efforts, the paper and ink of our Constitution will decay. But the ideas of this document will never decay, ever. The ideas and success of these guaranteed freedoms are in our minds, in our reason, in copies, in electronic media, in countless copies that exist in one of the first attempts to declare: "These are the rights innate to being human"; to Have Ideas and Discuss Them Freely. Including Religious Beliefs. Without Fear.

Paper and ink were merely the available media at the time in which to mark these ideas for the public to see. These ideas are with us as a people and as a global phenomenon.

Those who burn books utterly miss this point. This is a sad symbolic gesture of the past, of repression of ideas, of destruction of the only tangible media of communication at the time. It is pathetic.

Ideas, and religious beliefs, are transcendent. They cannot be destroyed by oxidation and heat. Any other reaction to this sad, limited pastor's actions endows him with a power which he does not have. He is free to believe as he does, without fear. And those who react otherwise imply that we should be afraid again. As free individuals, we are not obligated to revere that which others deem to be sacred. That is freedom of religion, freedom of speech, freedom of ideas, America at its very core.

Reason and our constitutional guarantees should make this burning a NON-event. However emotions run so, so high that many cannot see the fallacy of their reaction.

I therefore call for a disarmament of this purported event. I will select several books of great meaning and importance to me and symbolically burn them tomorrow in a safe manner. This is done to honor those who defend our right to do so; to emphasize the freedom of belief and ideas, to illustrate the truly ineffectual nature of the gesture. I know these ideas. I know these books. And so many others do too. Let him burn.

Whew.

This chemotherapy stuff is not for the timid. It drips into your arm, you're like this isn't so bad, then WHAM you are knocked on your bahonkey for quite some time. It is like, OK, we are going to put you on the tilt-a-whirl mad hatter cup ride, and attach several thousand leeches to suck all life energy from you, and when you get off we will tie 30 lb weights to each of your limbs and neck and let you get on with your week. And we will intermittently come and take off some weight and put it back on again, when you think its gone for good. And more leeches. And more rides. While you smell fried food, you know, like at the rides.

Anyway, started feeling fully human about Tuesday, and catching up on oh, pesky bills, taxes, etc before the next round. Glad to be moving forward. Thanks for all the well wishes.

On My Way

Smooth sailing with the chemo yesterday, now hitting a bit of rough seas. Nausea, headaches, but lots of good medicines to control the side effects, and lots of good care.

Glad I finally made it. To bring the story up to date, on arriving in south carolina, I saw an excellent plastic surgeon who scheduled my to have the expander removed 2 days later. This went without a hitch except for some post-anesthesia reactions that had me walking about the house like a herky-jerky Frankenstein (Fraankensteen)?? This too passed. Apparently my wacky immune system had formed some sort of capsule around the expander and planned to have nothing to do with it. Gotta love the consistency of this wacko immune system. Anyway, happily home with some drain leaking, (yes, another one!) fluid accumulating issues, however was about to have it pulled a week later when the night before...random severe illness and temp of 103. To doctor in the morning where they promptly admitted to the hospital for wound infection, 5 days of antibiotics and 2 more weeks delay till the start of chemo. Oy. And I won't even tell you how the transport guy took me to the wrong hospital from the clinic, Bethy ended up driving me herself and I showed up to the floor in a gown walking in with the IV sick as a dog. Yikes the logistics! But they took good care of me after that, got alot better within a couple days, went home and finished my antibiotics. I am just chock full o' medicines. So it was a great day when I finally got to start the next phase of treatment, and even though it's not great fun, it is progress. Bethy and I also tried a yoga class last week and I see if I can continue that to some degree as the treatment progresses. Kind people all around me. Thanks to all for all your kind wishes, cards, love.

No More Delays!

Even though I haven't gotten this blog quite up to date yet, there was still even more drama, I thought I'd let out the big news that I am getting my first chemotherapy dose today!! YAY. No more delays... and I thought that there was going to be one yesterday. I went to have a port placed--a thingie that accesses a big vein on the inside of your arm and then is sutured under the skin. So they just have to access that port for iv or blood draw instead of sticking you every time. So yesterday, feeling basically fine, I was ready to go until they took my vitals and my temp was 99.8. Not a fever, not normal, the dastardly grey area. So...they decided NOT to plant this in my body but...said lets see how you do overnight, and maybe, maybe we can give you the chemo through a vein. So home we went, and I determinedly took my temp 4-5 times, it was normal, and decided that the thermometer at the hospital was WRONG. Today, it was fine, so I got an IV, and into my veins the strong bad medicine goes. Progress....Next cycle two weeks, now shopping for hats and scarves with Emmy my 8yr old niece. Who has lots of opinions. And she is usually right. I really don't look as bad as this sickly lighting makes me look....yeah, it's the lighting...

On Becoming A Surgical Drain/Human Chimera

So I needed a mastectomy (because of lymph node involvement), then chemotherapy, then radiation. The plastic surgeon also needed to place an expander under the skin to make reconstruction easier later. The mastectomy was June 16th, and went very smoothly. I had never had general anesthesia before, although have seen it countless times. What a strange and wonderful thing...They pushed something into my IV, it burned a lot, then they started shaking me and saying "Wake up Catherine! Your surgery's over!" My first word, seriously, was "Already?" And so it was. I slept off the anesthesia, ate a little dinner that night, took pain meds, and was ready to go by lunchtime the next day. But...I had The Drains.

They are these little plastic bulbs that are attached to a tube that ends in the surgical wound to drain any fluid from all the inflammation due to surgery. One to two weeks of The Drains usually does the trick. My immune system, as usual, was not aware of this ballpark rule. The main issue with The Drains is that a: they hurt somewhat and b: you can't shower--this would increase chance of infection. Since I have a fancy shower with the option of a handheld spray, Bethy and I came up with this crazy cut-the-bottom-out-of-a-garbage-bag-step-inside-it-wrap-towel-over-that-with-bra-and-drains-on-safety-pin-whole-thing-tightly-don't-cut-off-circulation-to-head-wet-drain-prevention gizmo approach. You wouldn't believe how fast we got it down. Bethy had to help wash my hair because I couldn't lift my arm up. What a process. Since she was only there for a week, I had to manage with one arm as I got better, and also my hairdresser helped with no charge, I love that place. Anyway, the drains, they continued to drain. I thought I could control this process by making the most beautiful graph in Excel that I could, to present the data clearly, visually, and somehow force the drains to comply by making trend lines and "goal" lines at the minimum level required to pull the drains. One drain was pulled as the amount had trickled off..the remaining drain promptly started draining the same total amount as if the other drain were still there. The graph only had the one drain now, but the SAME TOTAL. I would rejoice over the smallest improvement. I would be devastated at the next day's uptick. I made a new graph of the rate of change of the rate--the integral. I thought this might force the drain to stop it. The drain was mute and unrelenting. A week after Bethy left, I just packed up and flew down to SC due to cabin fever in my house. There, I saw a surgeon at MUSC, she advised I get a special tight post-mastectomy bra and YAY-WEAR IT ALL NIGHT TOO! So I did this (they had these available right in the cancer center--great service) so I strapped myself in and awaited improvement. Flying back to Baltimore after a week, I called the plastic surgeon and said I was still draining 100 ml/day (supposed to be less than 30 ml). He said to come on in, but the situation apparently wasn't so urgent since they didn't give me an appointment for another week, during which the problem did not go away. At the office the next Tuesday, the plastic surgeon was sure that this represented a chronic mild infection of some sort, and he wanted to go back in, wash everything out, and replace the expander. I was READY--I said Let's do it! and he promptly scheduled me....for the next Monday. And...he pulled the drain...since surgery was going to happen. So I went home drainless, but found myself grumbling. If this was an infection, why wait till Monday? And why put another expander in if there is an infection....every doctor knows that you have to remove a foreign body to clear an infection. I think he was focusing more on the END RESULT of the reconstructive surgery as opposed to getting me to the rest of my treatment. I wanted to LIVE to have reconstructive surgery. And all of this delay is not necessarily good. By this time, I had already learned that 15/26 lymph nodes removed were positive--this made me a stage 3C, and the oncologist said that he wanted to be aggressive. I put in a call to the surgeon I had seen at MUSC, and she had the same concerns. She arranged for me to see a plastic surgeon that Monday who was affiliated with the Cancer Center there.

So I threw everything I could think of in the car, called the plastic surgeon in Baltimore and said that surgery was off, I just had to go south for my sanity, and drove south. Poor Bethy and John, I invaded their house the day after they returned from their family vacation to Paris and London. No rest for the weary! More excitement to follow... as the fluid continues to build up.....

Injury to Insult

I forgot to mention..a day or two after the biopsy, I answered a knock at the door only to find my onlybutbest sister on my Baltimore stoop, she had flown up to surprise and support me. We hung out, did a little shopping, watching movies, yakkin, etc. I was able to forget stuff for a while. Walking back to the house from coffee on the morning of her departure, I was focusing on the decidedly bushy state of the bushes in front of my house, instead of climbing the stairs; I had a new pair of sandals on....anyway, I tripped on an invisible object and I promptly slammed my forehead into the metal ironwork that is purportedly there for support; grabbed my head and said --"is it bleeding?" Bethy opened the door and said we have to go to the ER! as I gushed blood. The head has such dependable arterial circulation! So, I split my head open and had to be glued back together in the ER just in time for Tuesday's "CANCER PLAN" meeting. I had a big bandaid on my head. The ER PA was worried that I would have a scar....it is amazing how perspective changes the impact of the "small stuff". I just looked at him and said....I am not worried IN THE LEAST. I COULD CARE LESS. JUST STOP THE BLEEDING. Bethy missed her plane, but was able to reschedule without cost to her...she told the story, and offered to fax the ER documents to them; I guess they decided that it would be hard to make that up, and took corporate pity on us. So, a plus for the airlines, in the midst of me usually being annoyed with the recent nickel and diming. So I went to the meeting with Annie, and the best positive attitude I could muster, with a bandaid on my head.

Drama Act Two

Instead of going to the radiologist for the biopsy, I was referred to a breast surgeon... who had cared for both of my regular doctors (internist, gynecologist) who had both had breast cancer, believe it or not. So, he was a doctor's doctor. As he was preparing to do the biopsy, he kept trying to hide the biopsy device from view, which I didn't really sense at the time, and I kept trying to see it. He finally asks "What the heck do you wanna see this thing for??" and I was all, oh, I wasn't really trying, but I guess I was. They fire this nuclear needle device several inches into your flesh followed by immediate injection of painkiller locally. He had to do it twice. I cut off all circulation in the assistant's hand which was offered in kindness. All those people, from the receptionist, to the office manager, to the tech, are such sweet, kind people. The doc basically told me it was cancer from the ultrasounds alone, and that I needed a lot of tests done on the biopsy and on the rest of me.

Then began a whirlwind of MRIs, PET scans, CT scans, blood draws, and another visit to my internist to reassure the surgeon that I and my apparently "needs checking" body would be cleared for surgery. Now I graduated from medical school 23 years ago, and I have done nothing but newborns for the past 20 years. Breast cancer treatment 20 years ago was not only dim in my memory, but completely outdated, with only a bit of an update years ago when my mom was treated. I am COMPLETELY CLUELESS as to what constitutes staging, the need for different modalities of treatment, surgery, etc. I really felt like a real patient! It's hard! This really hit me when the surgeon emailed me the afternoon that I had the PET and CT scan done, and told me that there was no evidence of metastases (spread to other sites) which is a life and death distinction. I read the email, and proverbially, literally, "burst" into tears and sobbed into my hands for half an hour. I guess I was just doing a really good job of denying the possibility to myself up to that point. Exhausting to cry like that. I had to take a nap right away.

My next step was to meet with the surgeon after all tests were reviewed and presented at the weekly management conference with all specialists present. That was a long wait... and my surgeon, being the type of guy he is, said he would stay late the day of the conference to see me at 6:30.. this guy works so hard.... his patients are always in crisis. I appreciated this gesture so much. I am really learning how to be a better doctor. Communication is sooo important and I can always strive to become better at it.

So, Annie the Bellissima came with me and heard the news.....the tumor (yes TUMOR) was estrogen and progresterone receptor positive (GOOD)--opens up the treatment arena to drugs the utilize this receptor, and HERprotein negative (GOOD). Of course I had no idea what all these meant, I have since educated myself. The biopsied node was also positive (BAD). I would need a full mastectomy, axillary node dissection (the kind that leaves you with a puffy affected arm) and chemo, and radiation, and recontruction after that. Estimated time... 8 months (before reconstruction). And....he thought I should stay OUT of NICUs--too many horrible, resistant bugs. He kind of whined....do you HAVTA work?......really do you HAVTA? I got the message.

Yikes. I had a lot of 'splainin' to do to a lot of peeps on my schedule. I don't like backing out of scheduled work. Oy-as they said at Sinai. More to follow.

The Drama Begins

So it all began with a little lump, found by my excellent gynecologist on my routine annual exam. We had been through this before, with lumps, since I have what they call "dense breast tissue", and have had cysts that come and go before; I had been down the road of looking into these lumps with ultrasound, and being told that it was just a benign cyst. I was good at getting my annual mammograms (especially since my mom was treated for breast cancer); the last one in August was normal.

So I thought that this was the same cyst thing. My doc gave me the paperwork at the time of the exam--for an early mammogram and an ultrasound. Put the papers on my desk, and....went about my life with no urgency or concern at all. It was probably about 6 weeks later that I realized that the lump was still there, and it hurt a little now and then. It hadn't gone away like the others. So I made a routine appointment, and went in for the tests just to get it out of the way, and put this thing to rest.

So off I went on May 24th; I had to keep getting "repeat" or different views on the mammogram; they must have squished me 7 or 8 times; then I got to the ultrasound. Now I can't read a breast ultrasound, but I know what cysts kind of look like. The technician was taking pictures of a whole lot of irregular cystic-type lesions, but the shapes didn't look quite right. When she left to have the radiologist look at the pictures, I heard myself saying "I don't have a good feeling about this...."

..and my gut was right again. The radiologist came in and asked to examine me....(yes..a radiologist!) In retrospect, he did this because there were clear abnormalities on the ultrasound, but nothing abnormal could be seen on the mammogram. He went on to tell me this, and that the irregular areas probably represented the spread of cancer to lymph nodes within the breast. He said that it would be extremely surprising to him if it WASN'T cancer, and that I needed a biopsy right away. I scheduled it for 2 days later.

Whyfore

I decided to start this blog:

1- Not because I think that my thoughts and musings will have any interest to anyone other than ME.

2-The doctor thought it was a Good Idea.

3-For all the wonderful, incredible, and inexplicable people who have expressed an undeserved fondness for me, in order that my poor communication skills will not cause undue worrying/concern, and to communicate that your interest in my well-being ( I don't know why!) means the world to me, and has already made a difference in handling the rough spots...Thank you all, and I Mean It.

So here goes. More to follow!