What I want for Christmas

Peace, happiness and good health in 2011.  Honestly, I am ready for this year to be done and I am looking forward to an uneventful new year, healthwise.  As my breast cancer sisters like to say, I am currently dancing with "NED" (no evidence of disease) and I am hoping NED is my partner for life :>)

Merry Christmas and Happy New Year to all my friends, family and followers of this journey!

Elizabeth Edwards - Gone from this world

I think many of us were taken by surprise to learn that Elizabeth died the day after the announcement that she was gravely ill.  A whole community of breast cancer survivors were hoping for some kind of miracle.  Perhaps from her death the miracle of a cure will soon come.

And now comes the news that Fred Phelps and his so called "Christian" Westboro Baptist Church followers will picket her funeral because she was a supporter of gay rights.  What a disgraceful act of hatred!   If you believe in God, who is supposedly all loving and all merciful, how can you even think like this? 

Perhaps this is the final unforgiveable act that will drive a stake into the heart of this hateful group.  I can only wish.

Please keep Elizabeth Edwards in your thoughts and prayers

Elizabeth has shown us all how to deal with the pressures of life and death during the past few years.  And her prognosis is a kick in the gut for breast cancer survivors who are reminded that there is no cure.  We must never give up the fight to end this disease that will have taken 40,000 women just in the United States in 2010.

She issued a very moving statement yesterday:

"You all know that I have been sustained throughout my life by three saving graces -- my family, my friends, and a faith in the power of resilience and hope. These graces have carried me through difficult times and they have brought more joy to the good times than I ever could have imagined. The days of our lives, for all of us, are numbered. We know that. And yes, there are certainly times when we aren't able to muster as much strength and patience as we would like. It's called being human. But I have found that in the simple act of living with hope, and in the daily effort to have a positive impact in the world, the days I do have are made all the more meaningful and precious. And for that I am grateful. It isn't possible to put into words the love and gratitude I feel towards everyone who has and continues to support and inspire me every day. To you I simply say: you know"

Words to live by.

The biopsy from hell just keeps on giving...

Today I had my first post-lumpectomy mammogram and ultrasound, which took a really long time. As usual, waiting for results are stressful. And the last thing I wanted to hear was "the radiologist would like to review the results with you." The ultrasound showed 3 or 4 small "nodules" close to the skin surface, at least one of them with vascular involvement. And she recommended doing a biopsy. We then discussed my previous biopsy and the huge hematomas that resulted. And I told her that the surgeon had intended to remove them during my lumpectomy but decided against it because she saw they were being fed by arteries. According to the surgeon, it will take a year for them to be reabsorbed. So, with that knowledge, I said no to a biopsy and agreed that we will do another ultrasound in March just before my next followup with my breast surgeon.


I was mentally prepared for those hematomas to show up and cause concern. I'm glad I was aware of what was going on so that I could actually reassure the radiologist that we could take a "wait and see" approach. As long as they don't get bigger, there's no reason to think there's any trouble brewing. Everything else looked good.

Glad that's out of the way for three months!

So much to be thankful for!

On this Thanksgiving Day, I want to take a minute to reflect on the last few months...

I am so lucky to be here, feeling healthy, body parts relatively intact, and able to enjoy the holidays.  I am so grateful to my family and friends who have been a source of continuous support as I have traveled a path I didn't choose. 

To all of you who have supported me with financial donations to support breast cancer research, your cards and letters, your thoughtful gifts, your well wishes, prayers and postive thoughts - I am truly grateful. 

To my husband and children, you have all been there for me in ways I am sure you never imagined.  Having all of my children, their friends, my wonderful son-in-law Paul and adorable grandson Alex walk in the "Race for the Cure" for me is not something any of us would have expected to do.  I cannot express how proud I was of our family that day in Boston. 

To all the other family and friends (including my sister Mona) who supported "Hall Ass for the Cure" - I can never thank you enough.  The entire experience was beyond my wildest expectation.

I am thankful for my primary care physician, Dr. Elizabeth Dexter-Manade, who had to break the news to me that I did, indeed, have breast cancer, for her referral to an absolutely fabulous breast surgeon, Dr. Christa Balanoff.  I am forever grateful to Dr. Balanoff and her nurse Michelle for helping me through the process, acting as the "project manager" for my team of excellent doctors, and ensuring I got the best possible medical care.  The coordined efforts ensured that my tumor was evicted quickly, that I was properly prepared for Mammosite radiation and then moved on to the medical oncologist.  The Mammosite team at Kansas City Cancer Center took excellent care of me, ensuring that the radiation went perfectly and my catheter site healed without any sign of infection despite my protests about an over-abundance of caution :>)

And to our friends John and Donna... Donna - you are my hero, a true warrior whose best words of advice were "you don't have a minute to waste on negative thoughts!"  For those of you who don't know, Donna is a 3 time breast cancer survivor and has just recovered from her second mastectomy.  When I see a pink ribbon and think of what it represents, I think of Donna.  And John - thank you for being there for Rick.  He needed someone who had been through this and you were a huge help. 

And most of all, I am thankful for my husband of 30 years, Rick, who has been my rock through all of this.  Yes, he worried with me, and comforted me, and kept me sane when I thought for sure I would "lose it".   He supported my treatment decisions, took me to every doctor appointment and treatment (until I made him stop).  I can't imagine my life without you. 

May you all have a wonderful Thanksgiving and holiday season blessed with good health and the love of your family and friends.

A video to watch - and raise money for breast cancer research

About 136 former cheerleaders got together to do a dance routine to benefit "Susan G. Komen for the Cure" (Breast Cancer). Each time someone views the video, United Healthcare will make a $.10 donation to the Komen organization. Their goal is to get a million hits, which will lead to $100K raised.


Please can you take a moment to watch the video - and, just as important, pass this link onto your network of friends, family and colleagues? It benefits a very important cause!

Thanks for helping!


www.KomenPhiladelphia.org/Video

Pinktober and Breast Cancer Remembrance Day

Well, today is the last day of October; and as such, Breast Cancer Awareness Month is coming to an end.  I participate in a discussion board at http://www.breastcancer.org/ and there are some who think that the whole "Pinktober" thing is totally overdone.  There is concern that it appears there are lots of corporate donations heading towards breast cancer research, but that it might not be as much as it seems.  You can buy everything in "breast cancer ribbon pink" from a dishwashing scrubbie to a KitchenAid mixer, and pretty much any article of clothing, handbag, jewelry...you name it, you can get it.  Does Komen go too far by "pimping out" the pink ribbon, as some have suggested?  Or do you think it really helps the cause, and contributes millions of dollars to research for a cure? 

Personally, I'm OK with all the pink.  First, I always liked the color; I actually have a pink netbook that I ordered long before I got breast cancer.  Now it looks like I did it on purpose...lol.  I have pink ribbon jewelry made by a blogger friend/artist; I have shirts with pink ribbons collected from years of participating in the Komen Race for the Cure; and I have lots of wearable pink in my wardrobe because it just happens to be a good color for me.  I am not sure how I feel about seeing big, brawny NFL players wearing pink on gameday but then, the NFL is a huge supporter so I guess it's OK.

If all this "hoopla" really, truly raises awareness and makes one single woman do a self-exam, get a mammogram, and detect breast cancer early, then it's worth it.  If the money truly ends up in the hands of scientists who finally discover the magic bullet that cures breast cancer, then it's worth it. 

One survivor on the breastcancer.org blog wrote this, and I think it's a great idea:

"..I've also decided to create my own holiday: Breast Cancer Remembrance Day. On Oct, 31, the final day of Breast Cancer Awareness Month, I will remember the friends and family I have lost to this disease. It's Sunday, so I will light a candle for them and say some prayers...


"At 8:45 pm that night I will go outside with a flashlight. I'll think of the one in 8 U.S. women who will get breast cancer and the 45,000 who will die this year.

"My eighth grade science teacher told us if you turned on a flashlight and pointed it toward the sky the photons leave the flashlight and they immediately start to spread out. Provided that they don't hit anything, each individual photon travels through space forever.

"Time slows down as you approach the speed of light.

"I'll think of those whose time was all too brief and I'll hope for brighter days ahead."

So, Angie and Bev, I'll be thinking of you at 8:45 tonight.

And Donna, I'll be thinking of you at 8:45 tonight, too.  And tomorrow.  You see, tomorrow Donna will be having a mastectomy as breast cancer has paid her another unwelcome visit, for the third time.   Donna is a true warrior who has been to battle too many times. 

A cure ... we need a cure. 

A link to Paul's blog on our Boston Komen Race for the cure

My son-in-law Paul created a great blog entry for our family's Race for the Cure event.  Here's a link with some great pictures and Paul's narrative of the Race.  Alex is really growing up!

Alex's First Race for the Cure

Who knows, maybe he'll become a long-distance runner!

This is a great idea!

The Lymphedema Index (L-Dex)

Most women with breast cancer have had lymph node dissection, surgery and radiation as part of the treatment process.  After surgery, some women suffer from lymphedema because the normal lymphatic system has been disrupted.  Lymphedema can develop months or even years afterwards.   See the link for more information and causes:

http://en.wikipedia.org/wiki/Lymphedema

When I was in Boston for the Komen Race, they had a health expo set up the evening before the race.  There was a group demonstrating the L-Dex technology, which can measure a woman's risk of developing lymphedema.  I was curious about this, even though I am statistically at very low risk according to my breast surgeon.  I let them test me, which was an interesting process. 

Someone has a picture of me on the table having this done.  They hooked up leads to both arms and my right foot (opposite of my BC side) and mea­sure­ments were made by pass­ing a harm­less elec­tri­cal sig­nal of very low strength from the L-Dex device through my arm. Both arms were mea­sured and the whole pro­ce­dure took only min­utes to complete.

It works like this:  The elec­tri­cal sig­nal trav­els through the fluid sur­round­ing the cells which make up the mus­cle and tis­sue of the arm. The amount of this fluid increases as lym­phedema devel­ops.  Increased fluid means the elec­tri­cal sig­nal will travel more eas­ily through the arm. An L-Dex device com­pares how eas­ily the elec­tri­cal sig­nal trav­els in the unaf­fected ver­sus the affected (or at-risk) arms and gen­er­ates an L-Dex value from this comparison.

My score was a 4, which was well within normal range and indicates I am not at high risk.  If I had scored above 10, I would want to work with a lymphedema therapist and take precautions such as wearing a compression sleeve when flying.  Preventing lymphedema is easier than treating it once it occurs.

For more information, go to    http://www.l-dex.com/

 



Bone Density Scan - a little more info

I had an oncologist appointment today and the good news is that there was no news.  It was a "non-event" (even my blood pressure was normal) and I am now on the "every 3 month" schedule for the next 2 years. 

I  have a copy of my 3D QCT Bone Mineral Densitometry Report from last month.  I had to do a little research to see what all the values really mean.  So first, the QCT is an acronym for quantitative computed tomography.  It's different technology than the usual DEXA scan.  Here is a link to a sample report that looks just like mine:

http://www.avoidboneloss.com/qct.htm

My spine bone density value is 153.4 mg/cm3, with any value about 120 mg/cm3 indicative of normal bone density. So far, so good!

My T-Score is -0.58, with -1.0 being the bones of a 30 year old.  So my bones are better than a 30 year old.  More goodness.

And my Z-score is 1.81, which is also good news.

"The Z-score compares your bone density to that of other people of your age, sex and ethnic group. A negative Z-score means your bones are thinner and weaker than those of people similar to you, and a positive number means your bones are stronger."

I don't have to worry about osteoporosis at the moment.  I am still working on raising my Vitamin D level up to 70-80.  I was tested in June and I was at 45, which is OK. But I had just come back from a very sunny two weeks in Hawaii.  I expect that my levels would have been lower if the test were done at the end of the long dark winter, say...March.  Hopefully the calcium and D supplements will do their job and raise my levels to where I'd like them to be.   Femara does cause bone loss, so it looks like I have some "reserve" to stave off the side effects for now. 

By the way, I think it's a miracle that my bones are this good.  I have never been a milk drinker and I'm not big into exercise other than walking.  I've never taken calcium supplements unless you count Tums for an upset stomach ;>)

It's all good!

Michelle

We Hall'd A$$ in Boston!

Ready... to Hall A$$

As team captain, Christine made the "honor roll" for the donations to the team.

And our shirts were the hit of the party!  We were asked by race officials to submit a shirt for next year's "team shirt" contest.  We had a great time, everyone was able to walk the 3.1 miles and was still smiling when it was done.  The weather was spectacular and we enjoyed a great lunch on the waterfront after the race.

Surprisingly, the Boston race has just about 7,500 participants while the Kansas City race had well over 30,000 this year.  It was certainly less crowded and a bit more relaxed.

And most importantly, my kids raised about $1500 in donations for this race.  When you add it to the $2000 or so from the KC race and all our entry fees,  Hall A$$ for the Cure raised $4,000!!! 

Once again, thank you to everyone who contributed in so many ways!

Michelle

I am so proud...

of my four children, my son-in-law, my grandson Alex and all their friends who will be supporting me and all the other breast cancer survivors by participating in Saturday's Massachusetts Komen Race for the Cure, taking place in Boston.  This gang has raised over $1000 on behalf of "Hall A$$ for the Cure" and the Komen Foundation.   Thank you to Paul's parents for your support and  Grandma Rose who made a generous donation.   Our team tshirts are getting some great mileage!

And thank you to my friend Donna who got me involved in the Komen Race for the Cure more than a decade ago.  Rick and I have walked with Donna and John almost every year since Donna was first diagnosed with breast cancer about 14 years ago.  My daughter Allison has walked with us when she lived here.   Our hubbies have sacrificed their Sunday morning golf each year to support this cause.

Twelve years ago, Donna was diagnosed with a recurrence and underwent a mastectomy and chemotherapy.  Since that time, she had been cancer-free.  And she and John were very supportive during my recent breast cancer treatments. 

But you see, there is no "cure" for breast cancer.  And at dinner a couple weeks ago, Donna told us that she now has breast cancer in her other breast!  How can that be?  How can someone have breast cancer for a third time?  After twelve years?  Because breast cancer is insidious, that's why.  It doesn't really matter that you've had it before and fought with everything in your power to banish it, that you do all the right things they "say" helps to prevent a recurrence, like eating a healthy diet, exercising regularly, taking those "anti-hormones" or anti-breast cancer supplements...it doesn't always matter.  It doesn't matter that the odds are only 1 in 8 that you will get it in your lifetime, if you are that "1".  If you are a woman, you could be that "1".    More than once.

A woman's breast cancer journey is, once it begins, a lifelong trip.  It's a "rest of your life" worry that it could come back.  Because there is no cure.  You cannot dwell on this fact, you must carry on with your life in a positive manner and appreciate every single day.  Because there is no cure.  And there is no way to know whether or not you'll be that "1" again.  Because there is no cure.

We need a cure.  The Komen "Race for the Cure" is our hope.  It is our hope for ourselves, for our friends, our mothers, our sisters, our daughters, our granddaughters, and all generations to come. 

Please continue to support the Race for the Cure, wherever you live.   

Fish Oil : anti-breast cancer properties?

Many of us already take fish oil for its heart benefits, but here is another reason to consider taking it:

http://cancerhelpandtreatment.wordpress.com/2010/09/15/fish-oil-cuts-breast-cancer-risk/

I've seen research going back to 2008, so this is not a recent discovery.  However, there are now clinical trials recruiting to test a combination of Vitamin D and Fish Oil.  Preliminary information indicates a 32% reduced rate of invasive ductal cancer (so I am assuming either they're not measuring other types or it has no effect).  

Fish Oil is a fairly safe supplement.  You might not want to wait for the results of the clinical trial as that can take years.   Alas, the article doesn't say how much to take.  I think I'll stick with 1 gram a day for now.

Metformin and Breast Cancer

As a diabetic who has taken metformin since 2001, I am very interested in following the results of these particular clinical trials. 

Because my hormone receptors are "barely positive" and this protocol is being used for hormone negative prevention, I am even more interested. 

http://clinicaltrialsfeeds.org/clinical-trials/show/NCT01101438

There are other clinical trials that show a benefit of pairing metformin with or without traditional chemotherapy in a neoadjuvant setting (which means chemo before lumpectomy or mastectomy).  In many cases, the tumors are shrinking away completely.

http://jco.ascopubs.org/content/27/20/3297.full

http://doctorwascher.com/Archives/7-12-09.htm


This is the current Canadian clinical trial, which involves administering metformin for a few weeks prior to surgery (without traditional chemo):

http://clinicaltrials.gov/ct2/show/NCT00897884

Metformin works to reduce the amount of insulin circulating in the body and helps the cells to be more receptive to the insulin required to maintain glucose control.  I have read studies that indicate sugar feeds cancer, and too much insulin also feeds cancer cells. 

http://cebp.aacrjournals.org/content/18/3/701.full

So the fact that metformin would work to prevent cancer makes some sense.  Remember that almost half my tumor had "died" prior to surgery.  Well, we had doubled  my metformin right at my cancer diagnosis because my numbers were running too high.  It makes me wonder if the metformin did double duty.   There's no way to be sure, unfortunately.  But I'll be on this drug probably forever.  And unless the clinical trials prove otherwise, I'm hoping that the anti-cancer properties work for me.  I think they already did some good work!

Bone Density Scan - Normal

I had my scan this morning and got a call late this afternoon with a message that said my scan was normal.  I'll get more specifics when I go to the oncologist at the end of the month.  But I am impressed that I got the results the same day.  They are really on the ball!

To Margaret in Vancouver

First, let me promise that this blog will be here for quite some time!

Second, I know it's hard, but try to breathe and remember that the survival statistics for breast cancer are definitely on your side.  If your cancer is localized, the five year survival rate is 98%.  And even if it's spread to nodes, the rate is more than 83%.  You can see this information at http://seer.cancer.gov/statfacts/html/breast.html#survival

And keep in mind that these stats are 4 years old.  With newer treatment options arriving every day, the numbers keep improving.  So hang in there!  It's all scary as hell, but once you understand what your treatment plan will be, things will get so much easier and you'll start to feel "in control" of your destiny. 

I recommend you check out a couple of really good resources that will help you:

http://www.breastcancer.org/

http://www.komen.org/

Both of these sites have a wealth of reliable information, and knowledge is power; so you will learn so much by reading on these sites.  Breastcancer.org has a huge discussion board with more than 75000 participants and more than 62000 topics.  Wherever your journey takes you, you can be sure that many others have traveled the same route and you will be able to read how they handled it and know that they kicked cancer's butt! 

You may also email me directly at mchall6252@comcast.net and I will be happy to correspond directly with you if that would be helpful.  I'm not working at the moment, and providing support to a "sister" would be an honor.

My now-deceased brother was having a difficult time years ago with a personal situation and made the statement that it was just "wrinkles in the sheets of life".   Well, I am looking at breast cancer as just a wrinkle in the sheets of my life.  Not a death sentence, a wrinkle. 

Hugs to you!
Michelle

Wow! I didn't realize...

so many people were still interested in my journey.  Thanks to those of you who posted comments on my last entry!  I'll come back to this a bit more frequently.

For the moment, I am on "cruise control". I started taking Femara three weeks ago, and so far I am not experiencing any visible side effects.  The drug is expensive without insurance coverage (about $400 a month from what I hear).  My insurance covers most of it, and my three month supply is $80.  Additionally, Novartis has a program called "Femara Cares" and there is a coupon on their website, available for the taking.  I did send that coupon in with my prescription and it appears ExpressScripts either missed it or doesn't honor it.  If they don't honor it, I can send my prescription receipt in to Novartis and they will refund my copay down to $10 a month.  This is quite impressive for a "big pharma" company.  I've got to give them credit for doing a really good thing.  They will refund copays up to $800 annually. 

One of the possible long term effects of Femara is osteoporosis.  I am scheduled for a bone density scan tomorrow, which will determine whether or not we add a bisphosphonate to my regime (think Sally Field's ad for Boniva).  I have added calcium and vitamin D to my daily pill consumption.  I had my "D" level tested and it came in at 45...not bad but not great.  I'd like to get it up to at least 70. 

Speaking of pill consumption, I had to buy one of those pill boxes with AM and PM sections.  With diabetic meds, acetaminophen for my arthritic knees, and supplements that hopefully keep me healthy, I was opening way too many bottles twice a day and it was getting hard to keep track of what I was taking (ok, feel like an old lady now...lol).   It's a good thing I don't have an issue swallowing pills - some of them are rather large!  I actually have just 3 prescriptions - metformin, cozaar, and femara.  Everything else is OTC.  Oh, except for that wonderful little bottle of sleeping pills.  Never thought I'd need those, but let me tell you - during all the waiting and wondering and worrying, they were necessary to turn off my brain at 2 a.m. so I could sleep.  Fortunately, I am now managing to sleep OK most nights without the little hypnotic aid.

Things are winding down!

In the past week, I've seen the breast surgeon, the medical oncologist and the radiation oncologist.  OK, enough already!  I'm ready to be DONE with doctors for a while.  Everyone is happy with my progress.  My medical oncologist prescribed Femara, which I will likely take for the next five years.  And my radiation oncologist was complimentary of how I made my decision to not do chemo (not that he necessarily agreed with the decision, just that he thought I made a very informed decision). 

I will have a baseline bone density scan after Labor Day as Femara can cause osteoporosis.  I am taking calcium and vitamin D supplements, my vitamin D level was 45 and he likes it to be at least 50.  I am close and will happily work to get over that level.   Sunshine exposure helps!  He did labwork (Metabolic Panel and tumor marker test) which I've not yet received the results...need to call about that tomorrow morning.  And I go back to him towards the end of September, assuming I am tolerating the Femara well. 

Speaking of Femara, it's a very expensive drug at about $400 a month before insurance coverage.  With my plan, it would be over $200 for a 90 day supply.  But Novartis must be feeling some competitive heat from a competing drug, Arimidex, which just went generic.  So they have kindly provided a coupon that brings the monthly copay down to $10 and will  cover up to $800 of my remaining copays for a 12-month period.  Pretty sweet!

I am ready to get on with my life!

No intensive chemo planned

After much soul-searching, studying and talking it out with my family, I have decided to bypass chemotherapy and focus on the positives.   I will try a more "natural" approach to preventing recurrences, along with some help from bisphosphonates (the drugs used to prevent osteoporosis), aspirin, the metformin I'm already taking, consistent exercise, lower fat diet, and any other less toxic ideas that show promise.  If my oncologist agrees, I will also try anti-hormone therapy.  It's not likely to make a difference due to my weak hormone receptors; but if I can tolerate it without side effects, there is nothing to lose. 

Today is the first day of the rest of my life. 

Xeloda is off the table for me

I found what I was looking for.  This drug is not effective for triple negative breast cancer.  I won't be taking it. 

http://www.breastcancer.org/symptoms/types/ask_expert/2008_07/question_02.jsp

Visit to KU Med Oncologist and decisions to mull over this weekend

Man, that was an adventure!  I had a 10:00 appointment for which they asked that I show up 30 minutes ahead, so we were there at 9:30.   I filled out the necessary paperwork and then waited...and waited.  We were beckoned at about 10:40 or so, where I was weighed and measured, we went to an exam room for the requisite BP and temp taking, then we waited...and waited...and waited!  I would say about 11:45 a doctor finally came in and we talked for a few minutes, she did an exam of my now cancer-free breast, checked the armpits for nodes, checked the other breast, etc.

During our discussion, she tried to tell me that diabetics doing chemo had really good outcomes, which I immediately challenged with references to MD Anderson's statistics.  She was young and didn't have much to say at that point; and bottom line, she couldn't provide anything in the way of proof.  Rick said I might have been a bit too direct (well, probably!). 

Then Dr. Khan came in and really just asked a few questions about my diabetes and how well it was controlled, did I have any neuropathy or other side effects, etc.  Then I got dressed and we went off to a consultation room where he reviewed the flow chart for treating breast cancer that I have already seen.  He, of course, recommended chemo and then possibly anti-hormone therapy, depending on the status of my Estrogen Receptors, which will be tested in a path lab again.  I guess we're going with the best 3 out of 4 here.  He did say the Oncotype score was meaningless (which was what I suspected), and he gave me his prediction of my chance for distant recurrence - 30% within 10 years.  Well, that's better than the Onco score which was 34% so I gained a few odds in my favor...LOL!

We discussed the side effects of the two most popular chemo protocols - with one (TC) being the "up to" 70% risk of neuropathy and the other (AC) being a 5 times higher risk for cardiomyopathy.  He suggested we think about a first generation regime (CMF) that, while not as effective as the newer protocols, has as its main side effects a risk of leukemia and long-term loss of cognitive function (also known as chemo brain).  And last but not least, we discussed Xeloda, a "metronomic" chemo administered orally that hasn't proven itself as all that effective and has for its main side effect something called hand - foot syndrome.  Here's a little info on that nasty SE that occurs in up to 60% of the folks in the clinical trials:

Also called hand-foot syndrome or hand-to-foot syndrome, Palmar-Plantar Erythrodysesthesia is a side effect, which can occur with several types of chemotherapy or biologic therapy drugs used to treat cancer. For example, Capecitabine (Xeloda®), 5-Flurouracil (5FU), continuous-infusion doxorubicin, doxorubicin liposomal (Doxil®), and high-dose Interleukin-2 can cause this skin reaction for some patients. Following administration of chemotherapy, small amounts of drug leak out of very small blood vessels called capillaries in the palms of the hands and soles of the feet. Exposure of your hands and feet to heat as well as friction on your palms and soles increases the amount of drug in the capillaries and increases the amount of drug leakage. This leakage of drug results in redness, tenderness, and possibly peeling of the palms and soles. The redness, also known as palmar-plantar erythema, looks like sunburn. The areas affected can become dry and peel, with numbness or tingling developing. Hand-foot syndrome can be uncomfortable and can interfere with your ability to carry out normal activities.

None of this seems worth the risk as statistically, 100% of women with a Stage 1 breast cancer are live and kicking within five years.  Yup, that's what the Surveillance, Epidemiology, and End Results (SEER) Program of the National Institute of Health says.  Here's a link to this chart in case you're curious:

http://seer.cancer.gov/publications/survival/surv_breast.pdf

This program involves more than 250,000 cases of which more than 31,000 are the same size as my tumor - localized and 17 mm or 1.7 cm. 

Even if you consider my likely ER negative status, for which they had only 3 years of data (apparently they only started checking these hormone receptors in the very late 1980's), my 3 year survivability is more than 95%.

Unfortunately, this data is not as "modern" as we might like it to be, with statistics that end with 2001. 

So, what are the potential benefits of doing chemo, assuming I could magically escape each and every long-term side effect? 

Here's a link to the math calculator; remember when I said I just wanted this to be a math problem?  I've learned a great deal in the last couple of months, and it's just not that easy!

http://www.lifemath.net/cancer/breastcancer/therapy/index.php

I enter my age, size of tumor, grade and type of tumor, and hormone receptor status (using negatives for now).

The result is that there is a 22.6% death rate from cancer within 15 years.  Having no  chemo treatment shortens my 24 year life expectancy to 20 years.   If I proceed with the CMF chemo protocol, it buys back 229 days.  Hmmm.... and that doesn't count any impact from the chemo, like leukemia.  I would go through chemo hell for 229 days...doesn't sound like much of a deal to me.

The picture improves if by some miracle my hormone receptors  are declared positive.  With hormone therapy and no chemo, the 15 year cancer death rate is 12.2%.   Of course, now we're talking about osteoporosis as a side effect, but that can be treated.

I haven't mentioned much about Xeloda because I haven't yet found the clinical trial data that discusses its success rate.  I know it's being used by women who are Stage IV as they tend to cycle through various lower dose chemo drugs hoping to keep their metastises at bay.   That would not be applicable in my situation because....

There is no way to prove or disprove whether or not a single cancer cell made it past the Sentinel Node.  We know the nodes were clear.  We know that cancer cells typically go to the Sentinel Node first, before entering the rest of the body.  We know it was a very, very angry, fast-growing tumor that couldn't have been there very long or it would have been ginormous with its 90% proliferation rate. 

Here's where we are leaning:

If the new pathology report indicates positive hormone receptors, even weakly, then we will likely want to do something about anti-hormone therapy.  There is some likelihood that it might not be that effective under those circumstances.  We would probably take a "natural" approach to reducing my hormone levels, which can be checked via bloodwork to attain the same level that the anti-hormone drug would achieve.   If the pathology report surprises us with "positive" news (an unlikely scenario but one can hope), I will take the anti-hormone drug. 

Chemo does not seem to offer an acceptable risk/reward benefit.

Don't lose sight of the positive numbers - 70% chance of no distant recurrence in the next 10 years.  95-100% chance of surviving 5 years.  77.4% chance of surviving 15 years.

And one other thing...triple negative cancers typically recur in the first two or three years.  After that time, the risk is the same as the hormone positive cancers.  

And research continues with new breakthroughs each and every day.

OK, now my brain hurts (and if you've stayed with me up to this point, yours does too!!!)  and I need to stop thinking about this for a while.  Not sure what we are doing for dinner, but I think we need to do something fun.  Maybe a trip to Justus Drugstore for their delightful Sangria is in order.

Michelle

Glowing Success!

Yeah, I'm done!  Can you tell???  After 13 CT scans and 10 radioactive treatments, I've definitely got a new look...LOL!

Everything went superbly, the removal process was a big nothing, and I have completed another milestone along this journey.  I feel fine, other than a bit of sleepiness from the one Vicodin I took under pressure from the staff at the clinic.  I really didn't need it as I didn't feel any discomfort when the doctor drained the saline from the balloon and gently pulled it out along with the catheter.  

Everyone was so very nice, they even "hummed" Pomp and Circumstance as they brought me in for my last treatment.  After "graduation" they gave me a "Purple Heart" diploma signed by all the wonderful technicians and nurses.  

The doctor pulled the skin together to close the opening and applied steri strips, which I will need to keep in place until it heals.  Nurse Karen finished the "bandaging" and I was, as they say, outta there!  So, I still can't submerge myself in the pool or a bathtub until the hole heals over.  But I can take a shower carefully and sit in a floatie in the pool, just being careful not to topple in.  I think I can manage that!   I go back in two weeks for a follow-up.

It's going to be nice to sleep tonight without a 4 inch catheter sticking out of me.

Oh, and this is the first time I've seen the "cosmetic" results of the lumpectomy, because the cavity had been inflated for the whole time by the balloon with saline.   Amazing!  My breast surgeon is brilliant!  

Michelle

This will make you laugh!

Mammosite treatments, updates and plans

The radiation treatments are going well, no side effects that I can tell, and I have just 3 left!  Tomorrow afternoon I have to take pain meds (read that as Vicodin!) because after the last treatment, they will drain and deflate the balloon and pull it out.  I find it amusing that a place that administers chemotherapy can't administer a little lidocaine to numb the area and instead is pushing the pain pills...LOL!  I guess I'll be loopy for the rest of the afternoon and evening.  I wish Vicodin put me to sleep - I could look forward to a good nap! 

Funny story:  so as a child of the 50's and 60's and the cold war, I remember bomb drills and tv documentaries about the aftermath of nuclear war.  You've probably seen them (if you're over 50)...after a nuclear attack, men in white protective suits come out with geiger counters to measure radiation levels to determine if it's safe for everyone else to come out of their shelters.   I remember clearly having bad dreams about all this as it was a really big deal, especially the Cuban Missile Crisis.  Well, that's a little like what's happening to me after each treatment.  Yesterday morning I told the Physicist that he was "the man of my dreams " because after every treatment, he's the first one in the room, dressed in a white lab coat, approaching me with a geiger counter (which looks no different than the ones from my childhood visions).  He declares me "OK" then everyone else comes in behind him.  It was a very funny conversation but even funnier when I went back in the afternoon and he came in without his lab coat and said, "see, no white coat!" 

Yesterday, while I was waiting for my afternoon treatment, I received a call from "scary" oncologist number one, and we actually had a very good conversation.  I told him that I was seeking a second opinion, we talked about my weak ER score, the possibility of still trying anti-hormone therapy, and discussed the possibility of a "gentle chemotherapy" approach.  He seems to have "gotten it" as far as chemo and diabetes is concerned, and said that he would not now recommend Taxol or Taxotere for me because of the neuropathy side effects.  That's a turnabout from our first meeting, so I feel like he listened to me.   He did think it was encouraging that my tumor was much smaller than he thought and that I was now a Stage 1 with clear nodes.  He made me promise to call him on Monday, after visiting the onco at KU Med (Friday appt) and sleeping on the recommendations.  Maybe he's not so scary, after all :)  And I will call him.

Allison and Oreo are back in New Hampshire after spending a month with us.  It is certainly quiet around here without the little devil dog running around trying to chew on anything within reach.    Next weekend (8/14) Paul, Christine and the three grandkids will be here for a week.   Now that will be fun!  We have all kinds of things in mind to do, so I am  hoping the weather cooperates.  As much as I love the summer heat, a bit of a break will make it easier to do fun outdoor things like go to the Butterfly exhibit at Powell Gardens or take the kids to CoolCrest for mini-golf.  But there's always the pool, so we'll all have fun regardless of the weather.

Rick and I have planned a 4-day getaway to Estes Park, CO.  This will either be a celebration of "I've finished all the treatment" or a pleasant interlude before beginning some sort of gentle chemo (I really think that's an oxymoron!).  We are spending the first two nights at the Ponderosa Inn (doesn't that bring back memories???)  and then we are going to Kokopelli's Inn which is a B&B.  We went to Estes Park three years ago and just loved it, so we decided to return.  It's about a 10 hour drive across the state of Kansas, which is "bigger than you think".   Hehehe, that is their state tourism slogan and yup, it seems like it will never end when you're driving west on I-70!

And one last thing, now that I've gone on forever... don't forget that Sunday, August 8th, is Kansas City's Race for the Cure.  I know some of you indicated you wanted to participate but for lots of reasons didn't register on the team.  If you are participating but didn't sign up through the team registry, please let me know so we can meet up and walk together.  Also, we are going to breakfast at Chaz's in the Rafael after the race (9:30 or so).  If you'd like to join us, tell me and I'll add you to our reservation.  If you haven't registered but still want to walk, it's not too late.  You can even register on Sunday morning at Union Station.  It's probably going to be warm and I am planning on walking the one mile event (or having Rick "Hall" me along if I get too tired).  I'll leave the 3-mile jaunt to those of you in better shape than me!

That's it, I think.  You're caught up on all the news, and I'll let you all know how everything goes on Wednesday afternoon.

Michelle

Oncotype Results - ambiguous

The Oncotype DX score came back, but it may not be at all relevant. The score is based on the tumor being Estrogen (ER) positive (hormone receptive). That means that one of the long-term treatments is to take anti-estrogen medication for five years, and that has been shown to be the most effective treatment for node-negative early stage breast cancer with positive ER receptors.


My ER score is right on the edge of being positive. The Oncotype folks use a score of 6.5 to declare the cancer as ER+. My score was 6.2. It's a close call and apparently these things are not absolute.   My first oncologist made the statement "positive is positive" referring to the biopsy pathology report which called my ER "weakly positive".  My Progesterone receptor was more definitely negative. The cutoff is 5.5 and I was under 3.2, so that one is not ambiguous, but probably also less important.

And the HER2 score is 8.7, clearly negative with a cutoff of 11.5. HER2 is a gene that sends control signals to your cells, telling them to grow, divide, and make repairs. A healthy breast cell has 2 copies of the HER2 gene. Some kinds of breast cancer get started when a breast cell has more than 2 copies of that gene, and those copies start over-producing the HER2 protein. As a result, the affected cells grow and divide much too quickly. The treatment is a year's worth of Herceptin infusions, so I'm happy to be negative with that.

The surgeon had called me late Thursday afternoon and just stated the results, read the Oncotype score and said all the hormone receptors came back negative, without any clarification. That was bad news to say the least and we were extremely disappointed by what we heard. On Friday morning, I got a hard copy of the report with the details and realized that it wasn't quite as bad as I had feared. I had a brief discussion with the radiation oncologist and he seemed to discount the report, telling me to focus on the fact that the tumor was smaller than anticipated and the nodes were clear.  He also said that a tumor marker blood test, if taken now, would probably be normal.  However, the use of tumor marker tests is controversial and more useful when known tumors exist, chemotherapy is administered, and then retesting indicates the degree to which the treatment has been effective.

So, it's worrisome for sure. But we've decided to not be overly concerned for the moment and wait for the consultation with the oncologist (next Friday morning). In the meantime, I have been researching things like the effects of chemo on diabetics, "gentler" chemotherapy, alternatives to chemo that have shown to reduce recurrences, and any clinical trials that might apply to my situation. One new development involves a "vaccine" for "triple negative" cancer patients that looks very promising. 

On another note, the Mammosite radiation treatments have been going very well.  I have four down, six to go next Monday, Tuesday and Wednesday.  Last night I was very tired which could be a side effect...or it could have been the result of lack of sleep after stressing from the news we got on Thursday. 

My goal is to enjoy my weekend, spend time today with my mom and maybe try to do a little laundry.  I've been banned from vacuuming (must be a threat of dislodging the Mammosite catheter) so I'm assuming I shouldn't do anything too strenuous.  But I feel absolutely fine, other than some very skin minor irritation from a couple of stitches that have overstayed their welcome.

I hope everyone has a great weekend!

Michelle

Mother Daughter Time!

Today after my first radiation treatment, Allison and I had a little "girlie girl" time and had manicures, pedicures and then went to lunch. Check out the pink ribbons! She's going home tomorrow after a month here, I will miss her and her "devil dog" Oreo!

Michelle

Mammosite Radiation - treatments underway

As it turns out, yesterday was all about the prep work. Measurements, two CT scans because they had a hard time getting everything into exactly the right position. Plus my breast cavity had air in it, so they had to "massage" it out of there so that the tissue was making contact with the balloon. It's a very interesting process, and very labor-intensive. I must have 10 different people involved between the CT scans, the treatment, and then re-dressing the tube insertion area.


I had my first treatment this morning - it was a little before 10 by the time they turned on the machine because, once again, it took 2 CT Scans to make sure everything was in its proper place and they had to massage away the air from the cavity. You would think I was "pumping me up" with an inflater!!! And I was out of there by 10:15. It will be interesting to see how I'm feeling after a couple of days. But I will have two days off for the weekend, so maybe I won't even notice any unusual fatigue. Honestly, this whole roller-coaster ride has sapped my energy, and after radiation is finished I need to get "moving" so that my blood sugar numbers remain good.

My next appointment is at 3 this afternoon, but the treatment will begin no sooner than 3:50 because there has to be at least 6 hours between rads.
For the curious, here's a link to a little video that explains what happens:

http://www.mammosite.com/breast-lumpectomy/view-a-demonstration.cfm

And here's a little more detailed explanation of the Mammosite process:

http://www.wellsphere.com/healthcare-industry-policy-article/fda-clears-hologic-s-mammosite-r-multi-lumen-radiation-therapy-breast-cancer/787621

Technology is so fascinating!

Michelle

A little bit more about necrosis and why self-exams are critical

My tumor was classified as Grade 3, which is aggressive.  Here is a little bit more information about grading cell growth and necrosis from http://www.breastcancer.org/:

"Grade" of cancer cell growth: Patterns of cell growth are rated on a scale from 1 to 3 (also referred to as low, medium, and high instead of 1, 2 or 3). Calm, well-organized growth with few cells reproducing is considered grade 1. Disorganized, irregular growth patterns in which many cells are in the process of making new cells is called grade 3. The lower the grade, the more favorable the expected outcome. At the same time, the higher the grade, the more vulnerable the cancer is to treatments such as chemotherapy and radiation. Therefore, women with a "high" or "grade 3" breast cancer can also feel hopeful about treatment.


Dead cells within the tumor: It's tempting to think that the only good cancer cell is a dead cancer cell. However, necrosis (or dead tumor cells) is one of several signs of excessive tumor growth. It means that a tumor is growing so fast that some tumor cells wither and die because there's not enough blood supply to feed all of them. This is a small feature of the cancer but an unfavorable one, because the growth is at such a high rate.
 
___________________
 
This is interesting and explains to me why so many women have regular mammograms and don't get callbacks, then suddenly they discover a relatively large lump a few months later. 
 
I don't think it is an indicator of the likelihood of a recurrence.  Even though my tumor was high-grade, it had not spread to the nodes, which is where it's "supposed" to infiltrate first if the sentinel nodes are doing their jobs. 
 
The lesson learned is definitely to do your self-exams along with getting your annual mammograms.  Know your breasts, your lumps and bumps, and if you think there is something "different" going on, get it checked out.  Because yes, it could be nothing; or it could be an angry tumor.
 
Michelle

The road is a little shorter now!

There is happy dancing in the Hall household this evening!  I got the pathology report and it was so much better than expected.   The cancerous tumor was only 1.7 cm, not 3 cm as originally estimated.  Apparently there was a good amount of necrosis, making it appear much larger.  Here's an explanation from http://www.breastcancer.org/:

Necrosis in the tumor means that the cancer cells in that area are dead. The pathologic finding of necrosis suggests a fast-growing cancer. This often happens because the tumor runs out of blood supply in the central portion. Without a blood supply, the tumor cells cannot live. When a tumor is necrotic, it may be difficult or impossible to diagnose on a small biopsy, and an additional sample might need to be taken. Tumor necrosis is often focal (limited to a small area) in the region. There are usually living cancer cells nearby that can be diagnosed as cancer using a microscope.

So the tumor was fast-growing, but apparently it was also self-destructing because it didn't have a good blood supply.    Body, heal thyself!!!

Four lymph nodes were removed and biopsied.  All of them were clear of any microscopic cancer cells.  I actually didn't realize that she had taken four, and wondered why the biopsy site incision was almost the same as the tumor incision.  Now it makes sense.

We do not have the results of the retesting of the hormone receptors, which I requested as a precaution because the original pathology report indicated "weak staining".  The original oncologist said "positive is positive" so I'm not overly concerned about that.  But the second testing should confirm the degree of positive and hopefully give some reassurance that anti-hormone therapy will be the most effective course of action after radiation.

With the new information on the size of the tumor, the cancer is now considered to be Stage 1 rather than Stage 2.  That is very good news!

I have an appointment tomorrow morning at the radiation oncologist (and will need to reschedule my appointment with the medical oncologist).  I believe I will have a CT scan to verify the position of my anatomy and the Mammosite balloon.  I have heard that there is a bit of "training" via a video.   The surgeon thinks that I will have my first treatment tomorrow afternoon. 

And finally, the Oncotype test is due to be completed tomorrow.  I sent a fax to the lab authorizing them to release the results to my new oncologist and my surgeon.  I will get a call as soon as the results are received. 

Oh, and the "mother of invention" may need to come up with a new solution to keeping the Mammosite area dry.  Right now, it is bundled up and attached to my tummy in such a way that I won't be able to just slip it all into a sandwich bag.  Actually, the doctor suggested saran wrap!!!  I'll leave it alone at least until after my morning appointment tomorrow, then I'll reassess the situation.   I may take up someone's suggestion for duct tape - it can waterproof anything!

I may actually be able to get a non-chemically-induced good night's sleep tonight!

Michelle

News From Michelle

Michelle just called me and asked me to post this good news. Word from the pathology lab is that the tumor was 1.7 centimeters, not 3.0 centimeters, as was originally suspected last week during surgery. This greatly lessens the need for chemotherapy.

She is out with her Mom at the moment and then has a 3:45PM appointment with her surgeon to remove the stitches and to insert the Mammosite radiation tubes.

She said she will post more and elaborate when she returns home this evening.

David

No pathology report today

I called the doctor's office to check.  More patience required :>)

Pathology Report Should be in Today

I'm a little nervous...hoping that there are no surprises but recognizing that it might not be all that I'm hoping for.  I'm trying to keep those positive thoughts but I'll definitely be on edge until I get a call from the surgeon's office inviting me to come in to remove stitches, review the report and swap out the temporary Mammosite port for the real deal.  Hopefully, I'll be able to get in tomorrow; at the latest it will be Thursday.

Otherwise, I am feeling pretty good.  Just wishing I could float around in the pool, but at least I figured out how to shower and keep the Mammosite area dry.  It's a small price to pay for the opportunity to have the 5 day radiation protocol. 

Waiting...waiting...and keeping positive thoughts that all will be good.

Michelle

Bev - the Energizer Bunny

Those of you who worked with me at Sprint and Embarq remember Bev Noecker.  She battled breast cancer for 25 years and her spirit was and still is an inspiration to me.   I wanted her to see how many people were there supporting the Komen Foundation and Breast Cancer Research.  She was too weak to walk the course because she had bone and brain mets at the time.  But we were able to get her in with the group of survivors at the end of the race and have her surrounded by her sister survivors. 

She always wore a smile!

Please join me if you can on Sunday, August 8th.  The race starts at 7:30 a.m. and it's over in about an hour.  I guarantee that if you've never participated before, you will be in awe of the number of people who participate and the camaraderie that you will experience.   Walk in memory of Bev and others who have been taken too early by this dreadful disease.  Walk in celebration of me, and Lori, and Donna, and Angie, and all the other women you know who are fighting the good fight. 

Michelle

Survivor - Day 1...

and I feel great!  My incision for the tumor removal feels amazingly OK, and the biopsy site is only slightly tender.  I'm going with the Arthritis-strength Tylenol today as I don't think I really need the Vicodin.  I took it last night to be sure I didn't experience any pain, but it didn't keep me asleep. Tonight I'll try the Tylenol with my prescription sleeping pill - it works great for a good night's sleep.   Of course, I had quite a long "nap" yesterday afternoon so maybe that's why I woke up at 3:45 and took forever to get back to sleep.  And I was hungry!!!

Today I need to call the Breast Surgeon's office to schedule an appt for next week to get stitches removed and she has to do something with these Mammosite tubes.  And I need to contact the Oncology Radiologist to set up the 5 day radiation program.

I can't tell you how happy I am that I made the decision to do the surgery first and have the Sentinel Node Biopsy.  Although things could change in the final pathology report, the preliminary one showed no cancer cells in the node.   Had I done chemo prior to surgery, I would have never known the status of the nodes.  Knowledge is power!

Michelle

Came through with flying colors!

Yeahhh!!!  No lymph nodes removed, so no drains!  The tumor was 3 cm as we initially expected so there were absolutely no surprises.  The initial Sentinel Node biopsy was clear so there was no need to go further with node biopsies. 

I'm home, sitting in my recliner, drinking everything in site.  Not sure if it's the morphine they gave me or the anesthesia or general lack of fluids but I am really, really thirsty.  So I'll just keep on drinking...or go a second round with watermelon tonight. I have not experienced any nausea (thank you Patch), I don't have much pain (we'll see how that goes later this evening - I'll have Vicodin on hand) and I am going to sit back and rest with ice packs, my best friends!

The pathologist is going to retest my ER/PR status as it was a bit ambiguous from the initial biopsy.  Want to see something a little more definitive than "weakly positive".

I am a happy camper!

Michelle

She's out of surgery!!!

Mom is out of surgery.  The lymph nodes are clear and surgery went very well.  They put the placeholders in for the mamosite radiation.  The tumor measured 3cm.  She's in recovery right now.  It will be another 2 hours before we can see her.

Alli

Just a quick update

Just got back from Nuclear Medicine and the tracer dye injections were absolutely painless.  They numbed the injection area about 45 minutes before the procedure.  Huge relief!!!  Menorah Medical Center is using the latest protocols and they care about patient comfort and keeping the family informed.  I'm in good hands.

Good Luck and Best Wishes Today

Michelle:

Lots of prayers and good thoughts for this day. Wishing you the very best outcome.

David

Pre-op stuff finished, shopping done, time to relax

Allison and I were at Menorah a little before 9 this morning.  Traffic was OK in spite of the Grandview Triangle cave-in, which was a good thing. 

I had my lymphedema training, which was a way bigger deal than I thought.  Once a lymph node is removed, I could develop lymphedema at any time during the rest of my life!?!?  Here's a link to learn way more than you'll ever want to know about it:

http://www.mayoclinic.com/health/lymphedema/DS00609/DSECTION=causes

You can navigate at will through various topics.  Bottom line, I can never have my BP checked in my left arm, no blood draws, etc.  And I am supposed to wear a compression sleeve when I fly.  And always wear gloves when gardening or cleaning (hmmm....maybe I'll just avoid the cleaning part) and be cautious with any type of cut or burn.  And don't carry anything heavy on that shoulder.  All this for giving up one node!  That sounds like loads of fun.  I'll have to talk to some of my survivor friends to see just how far they go with these precautions. 

There are some very simple exercises for after surgery to keep the fluids moving through the lymphatic system.  Nothing difficult and probably a good 20 minute walk with arms swinging will take care of it.  Or the Wii Fit - bowling or yoga.  But then, I've never tried bowling with my left arm, that should be amusing!

My next stop was to Surgery Pre-Op.  They asked me my name, birthday and what surgery I was having (obviously checking for impaired brain function...lol).  I had another blood draw (because surely they couldn't have drawn enough for all the tests with last night's donation), the usual BP, oxygen, EKG, and a chest xray.  I had a consult with Nuclear Medicine to talk about the dreaded tracer dye for the Sentinel Node biopsy.  The nice young lady assured me that they use a tiny needle to insert the dye into and around the nipple (sorry guys!) and use a numbing agent with the dye.  I asked her if she would be willing to have the test without the Emla numbing cream (which is administered 45 minutes or so before the test).  She stumbled over her answer and that was all I needed.  I met with the anesthesiologist who explained the process for tomorrow.  I asked her about the numbing cream and she wasn't willing to order it as I am not "yet" her patient.  She did tell me I can use one of my anti-nausea patches that I used on my cruise, since I already had them. 

I then talked to the nurse, she called the surgeon and got the necessary approval for the Emla.  They let me know while I was in Radiology and I'm surprised they didn't hear my "woohoo" all way back in the Surgical area!  I also got my instructions for this evening, including the process to use for preventing MRSA.  Yeah, I think the sooner I'm out of there tomorrow, the better.  Hospitals are great places to pick up really ugly bugs. 

After the chest xray, we were "outta there" and headed over to a nice little restaurant for a mid-day cocktail and lunch.  An inhouse-berry-infused vodka, lemonade and club soda over ice was delightfully refreshing.  We actually sat outside, I had a great salmon salad with a dill dressing and some berries with cream for dessert.

We drove back to Independence and hit a few stores looking for a front-closing sports bra (suggested by the nurse but not required).  I bought a couple at Penney's then we went to Marshall's and found a few others that hooked in the back, but had more shape and seemed to be something I could wear under dressier clothes and not feel weird.  Mission accomplished.  Then it was off to Sonic for Happy Hour Diet Cherry Limeades.  One more stop to the grocery store for a few provisions and then home.  I'm actually going to cook dinner tonight, as I've eaten out for the past week and Taco Tuesday didn't sound appealing. 

Nerves are doing OK (my BP was actually quite good today) but I'll be glad when tomorrow is over.  Allison is charged with updating the blog tomorrow afternoon once I'm out of surgery and recovering. 

Now it's time for watermelon! 

Michelle

MRI Done! Pre-OP Appointments today

Hi everyone!

First, let me say a big "thank you" to everyone who is reading and commenting on my blog.  Knowing I have your support brings me lots of comfort and I truly appreciate each and every one of you!

Yesterday's flights back to Kansas City were totally uneventful.  I did have an opportunity to get bumped in Chicago ($800 worth of flight credits).  It was tempting but I knew I had to get back for the MRI, so I passed.  We landed just after 5 p.m., took Mom home and then drove to Overland Park near the hospital and had dinner. 

 We got to Menorah about 7:30 and went to the ER admissions desk for checkin.  Then we headed back to Radiology to wait.  And wait.  They were running an hour behind schedule.  I guess I'd better get used to "hurry up and wait mode".   Because I am diabetic, they decided that a blood draw was necessary to check my creatinine levels.  Apparently, the contrast dye can wreak havoc on weakened kidneys.  So off to the lab where the tech looked at my tiny shallow veins and decided to try a baby butterfly needle.  He inserted it and nothing...notta...not one drop.  He tried poking around until I made him stop.  So he gave up on that arm and tried my right arm, found something acceptable and was successful. 

Then it was back to Radiology to wait.  About 9 or so, they fetched me, I changed into hospital garb big enough for 3 of me then the tech inserted an IV for the contrast dye.  She hit it the first time, so that was no problem.  They gave me a headset and I tried to rock out to Kenny Chesney accompanied by the jackhammer sounds of the MRI in action.  Next time I'll ask for earplugs and the headset.  I didn't mind the position - on my tummy with cups to suspend each breast.  They tried to make me as comfy as possible.  My anatomy (short all over, really short neck) provided opportunity for some propping with towels, pillows under my knees, etc.  It wasn't uncomfortable and I'm not claustrophobic, so I did just fine.  But I think the music just added to the "din" although it helped me track how long I was there.  Once they started the dye and said 8-10 more minutes, I knew it was 2 or 3 songs and I'd be finished.  So it was helpful in a way.

When it was all over, I got dressed and we got home about 10:30.  It was a long day with the extra hour from the eastern time zone.

Two more stressful days this week. Today shouldn't be too bad.  I plan to eat watermelon to my heart's content as I need to be as hydrated as possible by midnight tonight.  I know...watermelon??? It's my favorite summer food and it will serve two purposes - hydration and electrolytes.  So yup, watermelon!

Well, time to get the show on the road.  Might need to go shopping for a sports bra after our hospital stuff.  Not exactly exciting, but I'm thinking I want more than one "boob binder"!

Hope you all have a wonderful day!

Michelle

Had a good week, getting a bit nervous

Mom and I had a very good week visiting family and friends.  We went to Hampton Beach twice, we got her siblings together for lunch (for the first time in years even though they all lived in the same town), she got to visit with her friends and play the violin, we saw other family members that we hadn't seen in a long time, and we played with the grandkids.  The weather was very "summery" which works for me, the two bedroom Residence Inn worked out great, and I ate lobster at least 3 times. 

The next 72 hours are going to be anxious ones.  I'm hoping everything goes well today and I get back to Menorah in time for my 8 p.m. MRI.  Never had one, so fear of the unknown is always the worst.  I am not particularly claustrophobic, so I think I'll be fine.  I've heard some people don't like the position but I am a tummy sleeper so I don't think that will be a problem.  I will probably be able to deal with the noise.  I am hoping there are no surprises as far as additional signs of cancer. 

Tomorrow morning I have to be at Menorah for a 9:00 appt. with Occupational Therapy.  This is precautionary, in case there is a need to remove additional lymph nodes.  They teach you how to prevent lymphedema.  I am hoping not to need to know.  Immediately afterwards, I go for pre-op testing.  Not sure what all that entails, but I'm guessing I'll be "donating" some blood, maybe chest xray and/or EKG.  I had a call last week from an RN who took my medical history so that part is done. 

Wednesday morning I am to report to Menorah a 11:00, thirsty and hungry...LOL!  Nothing after midnight, including water and no meds.  That doesn't bode well for finding my veins, so I'll have to drown myself on Tuesday right up to the last minute.  My veins are small and shallow and I've had way too many blood draw attempts that resulted in huge bruises.  If the technician uses a butterfly needle and is careful, it's no problem.  I don't think they can use a butterfly for IVs, though.  My blood sugar will probably be way higher than I like - the longer I don't eat in the morning, the higher it will go. 

The first procedure will take me to Nuclear Medicine where they will inject some dye to locate the Sentinel Node.  I've read about this and I'm not liking what I read.  There is a thread on breastcancer.org where women refer to it as "barbaric" and off the chart pain.  Some hospitals are starting to use lidocaine with the dye, but not all.  I don't know if Menorah will, but I am going to ask a lot of questions about this on Tuesday and try to get some clarification.    This is actually the one thing that I am most worried about. 

My lumpectomy is scheduled for 1:30.  And if everything goes according to plan, no surprises with the Sentinel Node biopsy, no additional node removals, clean margins, I should be going home that evening with placeholders inserted for the Mammosite radiation.  And I will be cancer-free.  Yippee!

Thanks to everyone for your wonderful support!

Michelle

Cancer has received its eviction notice!

I saw the breast surgeon this morning and we have a plan.   Next Monday, after I get back from New Hampshire, we will head over to Menorah and I will have an MRI at 8 p.m.  This is just to make sure there are no surprises lurking in my body.  On Tuesday, I will go to Menorah for pre-op stuff, and on Wednesday I report at 11 a.m. for surgery scheduled at 1:30.   If all goes well, I will be able to have the 5 day Mammosite radiation instead of the 33 day plan.  We did another ultrasound today and she thought everything still looked good and not "bigger" as the oncologist had indicated.  He was feeling hematomas...I'm still loaded with them.

So the only scary part is if something happens Monday to delay flights.  There is no room for delays...it's just how it had to be scheduled.  I will be begging to get on a plane to get back to KC in time for the MRI, should weather or something else wreak havoc on our anticipated arrival time. 

I will meet with a new oncologist at KU Med the following week.  That is a good thing. 

OK, on to New Hampshire for family, friends, beach, lobster, clams, and music.  And very little cancer talk because mom will be with me most of the time.

Things are looking up!

Time to Register for the Race

Just a reminder that it's time to register for the "Hall A$$" team if you want to participate in the Race for the Cure on Sunday, August 8th. Just click on the picture, then click on "Register for Michelle's Team" and you can complete the registration form. A couple of things:

1. I plan to walk the one mile family-friendly version. You're welcome to be a timed runner or walk the 5k but I will probably be recovering from surgery and will need to take it easy.

2. The race is family and pet-friendly. We've walked for about 12 years and you see baby strollers, wagons, and dogs on leashes.

3. There are lots of booths set up in the Union Station parking lot with free stuff: water, yogurt, ice cream, snack bars, etc. Also, many companies that support breast cancer research will be onsite.  In the past, the KC Chiefs cheerleaders have been there to cheer us on. And local youth cheerleading teams are all along the walk route. Also, last year there were a few music groups playing. It's quite a festive atmosphere!

4. It's pretty much all done by 9:00 at the latest, so you have the rest of the day.

5. There is plenty of parking in the area - most of the parking garages are open that morning and we never have a problem finding a good spot. We usually try to be there a little before 7:00.

And don't forget to let me know your sizes for our custom tshirts. We need to get a feel for how many we want to order.

Call me or email me if you have questions.

I am looking forward to seeing many of you at the Race! 

Michelle

And the answer is...

the first picture is a wig; the second one is the real deal.  Here's a better picture of the new do:

This will definitely work for the summer or until chemo does its thing.

Oncotype Test Ordered and Surgery May Happen Soon

I guess I got my point across today and the Oncologist finally ordered the Oncotype test. Results should be back in 7 - 10 days.  I also spoke with the breast surgeon and will see her next Monday before leaving for NH.  She said that she could schedule surgery as soon as I get back from my trip.  I'm ready for this beast to be evicted from my body!  Seriously, get it out of here!!!  I need to be healed so I can "Hall A$$" on 8/8!!!

She also said that there is one more Pathology test that has not yet come back.  It is a Proliferation Test that scores the rate at which my tumor cells are dividing and multiplying.  Let's hope for a low score.  Here's some info about this particular test:

http://breastcancer.about.com/od/tumormarkers/f/ki67.htm

Everything I've read about the process of dealing with breast cancer says that once you've got a plan in place, it's far less scary.  I'm starting to get it...

Live or Memorex???

Allison and I went looking at wigs today (trying to wrap my brain around the prospects of chemo) and then I went to my hair stylists for a radical cut and new color.  She thought it would be fun to challenge you to figure out which is the new "do" and which is the wig.  By the way, for you young'uns who don't get the "Live or Memorex" reference, Memorex made cassette tapes and their commercials claimed  that a musical  performance recorded with their product was as good as a live performance.

I find it amusing that the real 'do ended up looking so close to the wig I had tried on, which the stylist had not even seen except for the picture on Alli's phone.  I actually showed her a picture of a different wig and said that I really liked it better and wanted to try to get close to that style and color.  

So as you can see, I now have a nice short summer style that won't require much from me, assuming it gets to "hang around" for a while. 

Girls just wanna have fun >)

"A force to be reckoned with"

Elaine - thanks for that!  It gives me the confidence to continue to get the information I need to make informed decisions.  My doctors will learn this about me and if they can't handle it, they can't be my doctor.

I managed to get 5 minutes with my wonderful PCP this morning after the labs, and she is very supportive of having surgery first.  I need to temper her enthusiasm with her opinion that she would go straight for the mastectomy.  Her mom had breast cancer, so I understand where she's coming from.

She understands my need for the numbers, for the information.  Maybe she'll communicate with the rest of the team, so that they all "get it."  In the meantime, I will remain insistent.

Now Allison and I are going for a pedicure!

Some good news and some "what are they thinking..."

First, the good news:  the FISH test came back HER2 negative. That is what we wanted to hear. Also, I had a discussion with the oncologist about the "weak positive" status of my ER/PR testing and he said...positive is positive so don't worry about it.  OK

Now for the "what are they thinking" part... I have requested from 4 doctors the Oncotype DX testing.  As of today, not a single one of them has complied with my request.  I could just explode!  The oncologist said it would provide no information if the Sentined Nodes are positive.  Yes, I agree.  HOWEVER, if I do chemo first, we'll never know the SN status.  If I do surgery first with SN biopsy and they come out clean, then I will use the onco score to base a decision on chemo.  We discussed my need for this test on Tuesday...thoroughly!  I discussed this test with my breast surgeon's nurse last Friday...thoroughly!  How can they say it doesn't matter???

They're not listening to me.  They are on probation...lol!  I may fire them!

Radiation Oncologist Visit

Today's path led us to Lee's Summit's branch of the same Kansas City Cancer Center that we visited yesterday.  Although I always felt that computerized medical records were a really good idea, I now think it's INSANE that no one has figured this out.  Even within the same practice, different locations don't share your medical records.  Oh, they shared the billing information!  And when we first walked in and I checked in, I was pleasantly surprised that I didn't need to present my driver's license and insurance card.  They actually already had that information.   But when it came to my personal medical history, we had to start from the beginning.  It's time consuming, it's distressing to repeat the reasons for the deaths of siblings and parents, and you get to the point where you're trying to remember if you're telling every nurse the same information.  Has anyone heard of computers and databases???  They obviously have a network in place (remember they had the insurance info).  How this area of medical practice can be so "behind the times" just astounds me. 

OK, that's my vent for the day.

The appointment went well, we really liked the doctor a lot, and he explained things in a way that helped Rick and Allison understand better the options, the possible order of treatment, and risks/benefits of each.  Now they both understand why I need certain information before I can decide about chemo.  There are thinks I want to know. 

I want to know if my sentinel nodes are clear.  If I do chemo first, we'll never know.  If the nodes are clear prior to chemo, it's less likely that microscopic cancer cells are floating around the rest of my body.  I need to know this - it will reassure me.   

I need to know if I am a candidate for Mammosite radiation.  If we do chemo first, I am no longer eligible for Mammosite radiation.  What's the difference you ask?  Well, Mammasite radiation is 5 days of radiation - with 2 treatments a day.  There are fewer side effects and it seems better than 33 days of external beam radiation.   Here's a link for the curious among you:

http://www.mammosite.com/

I am now leaning heavily toward lumpectomy with Sentinel Node biopsy, with hopes of qualifying for Mammosite radiation. The surgeon will install the necessary
"tubing" if surgery goes well, she can get clear margins around the mass no larger than 3 cm or so, and the preliminary node biopsy looks clear.  The cosmetic result will not be as "pretty" but that's a tradeoff to get key information that can provide some piece of mind or identify a definite need for additional treatment.  There's always plastic surgery opions down the road... and a part of me just wants this thing out! Yesterday!