Friday, December 9, 2011

Mammosite may not be as effective as traditional whole breast radiation

This year's San Antonio Breast Cancer Symposium has produced some disturbing news regarding brachytherapy, and specifically the Mammosite radiation protocol that I underwent in July 2010.  It may explain why I am still fighting the beast...

SAN ANTONIO (EGMN) - Accelerated partial-breast brachytherapy, delivered as part of breast-conserving therapy for early breast cancer, was associated with twice the mastectomy rate when compared with standard whole-breast irradiation in a large study.

Moreover, accelerated partial-breast brachytherapy entailed substantially higher rates of both acute and late complications, Dr. Benjamin D. Smith said in a presentation of the study findings at the San Antonio Breast Cancer Symposium.

Investigators reviewed Medicare claims data for all 130,535 beneficiaries whose early breast cancer was treated with lumpectomy followed by adjuvant radiation during 2000-2007. The use of accelerated partial-breast brachytherapy in this population rose from less than 1% in 2000 to 13% in 2007.  The incidence of mastectomy during 5 years of follow-up was 4% in 7,291 brachytherapy recipients, compared with 2% after whole breast irradiation (P less than .001). Upon adjustment for the brachytherapy recipients' older average age, more comorbid conditions, and lesser rate of positive axillary lymph nodes, brachytherapy was associated with a 2.2-fold increased risk of losing the treated breast within 5 years, reported Dr. Smith, a radiation oncologist at the University of Texas M.D. Anderson Cancer Center, Houston.

"When we adjusted for various clinical and sociodemographic factors, to our surprise brachytherapy was the variable that had the strongest correlation with the risk of subsequent mastectomy," he noted.
Partial-breast brachytherapy was also associated with significantly higher rates of postoperative wound infection and acute noninfectious complications as well as increased 5-year rates of fat necrosis and breast pain. Fat necrosis is considered a marker of tissue injury caused by surgery and/or radiotherapy.
Within 1 year of breast cancer diagnosis, infectious complications involving breast or surrounding skin or soft tissues occurred in 16% of women treated with brachytherapy vs. 10% of those who received standard whole breast radiation.

Noninfectious complications including surgical wound breakdown, postoperative bleeding, or seroma formation were twice as common with brachytherapy at 16% and 8%, respectively.
Five-year rates of fat necrosis (9% vs. 4%) and breast pain (15% vs. 12%) also were higher with brachytherapy.

Accelerated partial-breast brachytherapy was developed to address the shortcomings of whole-breast irradiation, the historic standard of care, which entails up to 7 weeks of daily Monday-through-Friday treatment. Whole-breast irradiation is inconvenient. Indeed, it's such a hardship, especially for patients in rural areas distant from a radiotherapy center, that some women opt for mastectomy as a matter of convenience. Moreover, 15%-30% of women who undergo lumpectomy forgo prescribed radiation therapy, placing themselves at increased risk of local recurrence.

Accelerated partial-breast brachytherapy may improve patient compliance with radiotherapy. It shortens the treatment course to 1 week. It entails temporary placement of radioactive beads within the breast via a catheter system. This method delivers radiation only to breast tissue immediately adjacent to the lumpectomy. This technique is but one of several forms of partial breast irradiation, however; the new findings don't apply to 3-D external beam radiation, for example.  Accelerated partial breast brachytherapy has boomed in popularity in recent years, especially in community practice. But these new data may put the brakes on that trend.

"This study has changed the way that I think about these two different treatment options, and it's changed the way I practice," Dr. Smith said in an interview.  Dr. Jennifer A. Ligibel, who chaired a press conference where Dr. Smith presented his findings, said the study carries an important message: "Although observational data using a claims database are no substitute for a randomized trial with long-term follow-up, what we see in this study is that this technique was not as effective and it was also associated with a lot more complications. So if your argument in using this is that it's sparing patients from additional problems, we're not seeing that in this study." 

"I think this study really does give pause to the incorporation of accelerated partial-breast brachytherapy into routine clinical practice. These results should make people wait for the results of the ongoing randomized trials before they offer this as a standard procedure for their patients," added Dr. Ligibel of Dana-Farber Cancer Center, Boston.

The major randomized trial underway is the National Surgical Breast and Bowel Project B-39/Radiation Therapy Oncology Group 0413 study. The NSABP B-39/RTOG 0413 trial has enrolled 4,000 of a planned 4,500 patients with early breast cancer. The emphasis is on patients under age 50, since they have a higher local recurrence risk than older women. Participants are randomized to whole-breast radiation or various forms of partial breast irradiation after lumpectomy. Mature results aren't expected until mid-decade.

Dr. Smith and Dr. Ligibel declared having no relevant financial interests."

No one told me this wasn't a proven technology.  Everything I read at the time led me to believe that recurrence rates were lower than standard radiation procedures.  Now I know why the first Dana Farber medical oncologist that I saw last May stated that they would have talked me out of Mammosite...they don't offer the procedure.  Apparently Johns Hopkins has been steadfast in their opinion that brachytherapy was not a reliable protocol. 

Now there are thousands of women, mostly 50 and over with early stage breast cancer, who were treated with brachytherapy and will worry that they will become one of the "failures" and face additional treatment because of a recurrence, infection or other complication.  

Am I an example of brachytherapy failure?  Quite possibly.

Wednesday, December 7, 2011

My hair is growing quickly, radiation is going well, and the tree is up!

I had a little fun with my hair growth pictures today.  You can see that I now have just about what I had when I got it cut just before starting chemo.  The back is coming in nicely and while I said back in June that I wouldn't color it...I've had a serious change of heart!  I'm loving the reddish brown color, thanks to L'Oreal.  And at about $7 a bottle, it's a whole lot less expensive than the $75-100 salon coloring that I had in the past.  It's nice to see the hair on the back of my neck reaching my collar!  Back in April, I couldn't imagine being finished with chemo and now I am 10 weeks beyond it.  Time certainly is flying by!

I had my first radiation treatment a week ago, so today will be #6.  So far, so good.  The traffic has been relatively cooperative and I am not having any side effects.  I meet with the radiation oncologist weekly (on Tuesdays) and he said that I shouldn't see any skin changes for two more weeks.  In the meantime, I am moisturizing twice a day with Moisturel, which was on the list of recommended products.  I think the ingredients are very similar to Aquaphor, which many patients use and was also on the list.  I've been using Moisturel on my face and dry areas like elbows for 20 years, so I had it handy. 

My appointment times have been pretty good so far.  We started with 7 p.m. treatments last week, then they quickly changed to 6 p.m.  The drive in to Boston has been good every time except last Thursday when there was a holiday tree lighting ceremony and Rte 93 and Storrow Drive were backed up for a few miles.  Even so, we made it to Dana Farber in just about 90 minutes.  Most days it's taking just over an hour.  Tonight's trip may be ugly - it's been raining all day and I heard traffic was a mess.  My only hope is that everyone is already in the city and will be trying to get out while we are coming in.  After treatment tonight we are meeting friends for dinner in Quincy, which is a bit to the south.  I am going to find us a route that keeps us off 93 and on surface roads as that may be a better option.  By the time we eat and head for home, we should be in the clear.

Many of you know that for the past few years we've ordered a Christmas tree and had it shipped from NH to MO and the trees have been beautiful.  Well, this year we took a little road trip to Colebrook on the Saturday after Thanksgiving with our friends Ann & Jack.  After spending the night at the Omni Bretton Arms across the way from the Mt. Washington Hotel, we drove to Weir Tree Farm and chose our tree.  The nice folks at the farm cut it for us and hauled it down to the barn area, where they shook all the needles out of the tree, tied it up and secured it to the roof of the car.  It was fun to see the tree farm, which was huge - Christmas trees for as far as the eye could see.  They sell about 10,000 trees each year between wholesale, mail order and choose and cut customers.  I do believe this will become an annual tradition for us.  We had a fabulous time with our friends, the food was delicious, the view was spectacular and the tree is spectacular. 

Yup, it goes all the way up to the ceiling - almost 9' of Fralsam Fir and it completely blocks the use of the  It took me about 7 hours to decorate it, and it was worth every minute of my time. 

Thursday, November 17, 2011

Radiation planning complete

Today's radiation planning session went very well.  It took about 30 minutes for the technicians and doctors to get me placed properly and calculate where to place the dreaded tattoos.  I've heard some horror stories about having to stay in the same position with your arms over your head for up to 45 minutes.  I'd say that I was in that position for just a few minutes, maybe less than five.  Then I was allowed to relax my arms while they were back in their "command central" doing whatever they do.  There was one CT scan (which showed those notorious internal mammary nodes to be looking normal) which took less than a minute.  The doctors and technicians came out a few times to check and make sure I was comfortable.  After they were sure about placement, the techs came out and one of them did 6 quick tattoos.  They didn't hurt physically - very small needles were used.  I asked about alternatives to the "lifetime" reminders but they had nothing to offer.  Only one is likely to ever be visible to the public - it is in my "v-neck" area.  And if my skin had any freckles or marks at all in that area, it would probably blend in and be unnoticed.

Dr. Harris told us that they will be able to radiate my chest wall without involving my heart and lungs.  That is very encouraging as heart and lung damage has been a real concern.   The electron beam technology allows them to calculate angles that can direct the radiation to the right areas and avoid damage to vital organs. 

While we were waiting for the valet to fetch our car, I got a call from my medical oncologist and she informed me that my tumor markers (CA 27.29 test) were in the normal range.  The top of the range is 38 and I was at 34.  That's ten points less than they were seven weeks ago, so I am happy about that.

Today's round trip to Boston was just over four hours.  We didn't encounter any unusual traffic on the way in, but it was raining a little when we left for home.  And we were leaving just after 3 p.m. which is the beginning of the evening rush hour.  Hopefully with the upcoming holidays, we'll be able to trim some time off this run.  With students going on semester break and workers using up leftover vacation time, the traffic should gradually decrease during December.   

Tuesday, November 15, 2011

Zaps to begin soon

Just got back from my appointment with Dr. Harris, and we now have a plan.  I will go on Thursday for the planning session, which takes about an hour.  I'll get five tattoos (not happy about that) to assist with lining me up for the treatments.  They will make a custom plate to protect my heart.  On 11/29 I will go in for a dry run and CT scan, then radiation will begin on 11/30.  There will be 25 treatments to my chest wall, internal mammary nodes and supra-clavicle nodes.  An additional 5 treatments (boosts) will be directed at my mastectomy scar line.  They will be using electron beam technology as it keeps the radiation closer to the skin and chest wall...shallow...and away from the vital organs. 

Not exactly sure about how the holidays will impact all this; but if my calculations are correct, I will be done on January 9th.  Now we need Mother Nature to postpone winter weather. 

Sunday, November 13, 2011

The Hair Journey and Other News

I spent a little time putting together some pictures of my chemo hair experience, which is now five months along. The top left picture shows me getting that pre-chemo buzz cut on June 12. That's when I saw my real hair color for the first time in about 20 years! The bottom right picture shows my hair coming in on November 12 and colored with a little help from L'Oreal. It's just a temporary color but it looks better than the "grandma" white that you see in the picture on the bottom left. I'm pretty happy, at six weeks post-chemo, to have hair that could even take a color!

I had my six weeks follow-up with my oncologist last Wednesday and it was delightfully uneventful. My labs looked good and I feel pretty good, too. Earlier the same day I had an appointment with my new primary care physician, so I am now doubly assured that my ticker is working properly, I weigh 122, my blood pressure is normal and neither doc could feel any unwelcome lumps or bumps.

One cool thing - let's give a big "hurrah" for electronic medical records! My new PCP is part of the Elliot Hospital system. Because they have e-records and Dana Farber is somewhat tied into Elliot, she has access to all of my records that have been generated since we moved here. Even better, they can electronically transmit your prescriptions directly to the pharmacy of your choice, including the mail order guys like Express Scripts. Extremely convenient!!!

I have an appointment on Tuesday with Dr. Harris, my Radiation Oncologist at Dana Farber. I thought this might be the radiation planning session; but based on the confirmation call that I received on Friday, I now think it's just a consultation. I'm sure we'll get started soon. Not looking forward to it, the daily drive is going to be tiring for both of us. This, too, will pass...once it gets started.
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Wednesday, October 26, 2011

Expanders are out, everything went well

Just got home about an hour ago. We even stopped and had dinner at Texas Roadhouse (now I know how Rick intends to feed me over the next couple of days).

We got to the hospital around 10:30 and they got me ready. Even though I drank plenty up until about 7:30 this morning, the first attempt at an IV was a failure so I showed the nurse where to make the second attempt. The anesthesiologist was there along with three other nurses - it was quite a party - so the poor nurse was under a lot of pressure!

The doctor came in and marked me up about 11:45 and they took me away at about 12:20. I remember getting from the guerney to the OR table, then it was lights out until I woke up in the Recovery Room about 2:30 or so. Apparently, unbelievably, my Kansas Plastic Surgeon had put in 600 cc tissue expanders rather than the 375 cc ones that he told me he had inserted. So the removal took longer than expected. I guess I missed a big opportunity to be "boobalicious" It's no wonder those things were so uncomfortable, they were way, way too big for me. Rick was starting to get a little worried because of the additional time involved. But everything was ok.

I was awake in the recovery room for probably 45 minutes. They gave me a snack and a drink, my discharge information and then I got dressed and was out of there. We were at Texas Roadhouse at just past 4 p.m. and we were back in the car at 4:40!

It's nice to be able to take a deep breath and not feel those obnoxious expanders! I'm not in any pain at all, surprisingly. You'd think it might hurt a little. Maybe the anesthesia is still doing its job, or I was already numb from the mastectomies and it's just not going to hurt that much. In any case, I have prescriptions for three days of antibiotics and some Tylenol with Codeine, in case I need it later.

The surgeon told Rick that he "looked around inside" after he removed the expanders and everything looked very good. That is very good, indeed!  And he just called to check on me and make sure I was doing well.  The care has been excellent!

Recovery should be simple, I can shower tomorrow and resume all of my normal activities except I have a 10 pound weight restriction until I go back to see the doctor in 10-14 days.
I guess next week will include a shopping trip for some prostheses and appropriate bras.  That should be another fun experience. 

Wednesday, October 19, 2011

Surgery confirmed for October 26th

We are on vacation, hoping to get away from some of the breast cancer stress.   The weather here in Florida has been less than ideal for beach and pool, but just fine for spending time with friends, shopping, dining, and a little casino action.

Today I got a call from Faulkner Hospital in Boston, and I will be going there on Tuesday the 25th for my pre-op physical and tests.  I'll have to undergo an EKG, although hopefully I won't need a chest xray or any lab work as I have test results that are less than 30 days old. 

Surgery will be on Wednesday at 11:30.  I have to be there at 10:00, so that is not too bad.  It is an "easy" surgery (if there is such a thing) and I'll go home later in the afternoon.  The tissue expanders will be removed and i will be able to take a deep breath again.  I'm not all that upset about this turn of events, and I know it's the right thing so that we can proceed with radiation. 

Wouldn't it be nice if one of my previous surgeons had mentioned to me, before my mastectomies and immediate reconstruction back in April, that these tisue expanders might cause a problem with radiation?  It's not like we didn't know that radiation would be necessary.  It took me about 30 minutes of internet research to figure out that partially filled tissue expanders would cause a problem with radiation planning, where pinpoint accuracy is necessary.   

Someone asked me who was the "project manager" for my care.  Breast cancer treatment involves, at a minimum, a breast surgeon, plastic surgeon, medical oncologist, radiation oncologist and your primary care physician.  At this point, I am the project manager.  It's my body, someone has to take control, and I think it had better be my job. 

Friday, October 14, 2011

Complicated doesn't begin to describe it...

I had my consultation with the Dana Farber Radiation Oncologist (RO) today, Dr. Jay Harris, and we were very impressed.  First, a resident and a medical student came in and took my history and examined me.  Then they went off and shared their findings with Dr. Harris.   Dr. Katz (my first  RO) had sent some information, also.  So Dr. Harris was fully armed with enough information to make the right recommendations.

His first request is that I have the left tissue expander removed.   It is covering my heart, and he is concerned that if it remains, he will not be able to radiate my chest wall without doing collateral damage.  With the TE out of there, he will use electron beam technology which can be pointed at the proper angles to avoid heart and lung damage.  I agreed that I would have BOTH of them removed.  I hate them; if one has to go, they can both go.  He was pleased with that decision.  I have a tentative surgery date of October 26th with Dr. Hergrueter at Brigham & Women's.

Dr. Harris will then radiate the internal mammary nodes that showed up as cancerous on the earlier PET/CT scan.  And he will radiate the supra-clavical nodes (in the area of the neck).  And the mastectomy scar line will get an extra blast. 

With all this, I will have a 30-50% risk of spontaneous broken ribs.  My left rib cage took about 50% of the radiation from last year's Mammosite, so it's going to get a really big radiation dose, which weakens the bones.  They don't see this as life-threatening, although if it happens it will be quite painful as there is no treatment.   He doesn't think that my heart, lungs, or thyroid will be impacted.  Also, he is not going to radiate the axilla area (armpit) so that should cut the risk of developing lymphadema.

Radiation reduces my risk of recurrence from 30% to 10%.  And oh, it appears that this cancer was not a recurrence but rather what was missed from the first round of surgery and radiation.  It showed up in the area of the biopsy scar, and as I have suspected all along,  cancer cells were trapped in the hematomas then released as the hematomas dissolved.  The radiologist at the Breast Center at Menorah was the only one who was suspicious, back in December, and it turns out she was probably right on.  She wanted to do a biopsy and both the medical oncologist and the breast surgeon thought it was nothing. 

Having radiation at Dana Farber will involve about a 3-4 hour round trip each and every weekday for seven weeks.  We will check out public transportation options to see if there is a way to minimize the commute.   This will get very interesting with traffic and winter weather on the horizon.

I am very much looking forward to our Florida beach vacation next week!!!

Wednesday, October 12, 2011

It's all gone!!!

Yes, it is!  I had a PET/CT scan yesterday and I got the best news of my life this morning - the cancer is ALL GONE!  After 16 months of biopsies, worries, waiting, treatments, more biopsies, more worrying and more waiting, my family, friends and I can all enjoy a collective sigh of relief!  Those nasty internal mammary nodes didn't light up; actually nothing from my eyebrows to my knees showed any signs of cancer.

I cannot begin to express how I am feeling right now.  It is now exactly two weeks after my last chemo and I am going to forever celebrate 9/28/2011 as my "cancerversary."  Undergoing chemo was the hardest thing I've ever done in my life, and it seems appropriate to celebrate its end as I now start to count off the days of my life as a true "survivor." 

I'll be consulting with Dr. Harris this Friday.  He is the head of Radiation Oncology at Dana Farber and one of the best in the country.  That said, I am totally impressed with the knowledge and compassion of Dr. Matthew Katz, who is part of the Elliott Hopsital Oncology Department and with whom I had my first consult.  He ordered the PET and he called me less than 24 hours after the test with the results.  His credentials are pretty impressive, too.

I'm borrowing a saying from Eleanor Roosevelt. "A woman is like a teabag. You never know how strong she is until she gets into hot water."

Wednesday, September 28, 2011

It's a wrap!

I am now 8 hours PFC!!!  Where's my hair?  Just kidding, of course.  It will come, my head has a whole lot of stubble and fuzz.  My eyelashes are completely gone and my normal eyebrows have been replaced by a crop of colorless hair whose only purpose seems to be to give me a little clue where I should be attempting to add some color. 

My daughter Christine turned my chemo suite into a Paris bistro serving a continental breakfast - fruit, eclairs, French cheeses, baguettes, dark chocolate and sparkling cider!  There's a good reason why her in-laws named her the "Minister of Fun!"  We fed everyone in the place. All the staff stopped by for goodies including my oncologist and the PA, patients either stopped by or Christine delivered to them, and we made sure to include the first smiling faces we see every time we walk into the center - the patient registration gals. 
 My look for the Paparazzi!  Is it Jaclyn Smith or Sleeping Beauty behind those shades?  Or maybe Sally Field?
 A little mother/daughter posing.  Christine, don't worry about the weight - you've got three inches on me and you look fantastic! 
 My treatment team posing with me.  On the left is Summer, who greeted me each time, took my vitals and made me comfortable.  And on the right is chemo nurse Lisa, who took care of my every medical need and left  no question unanswered.  She was there for every single treatment - amazing!
This saint, also my namesake Michelle, is the Financial Advisor.  She spent countless hours on the phone with my insurance company trying to convince them that this location was a chemo infusion center and not the main hospital in Boston.  Her patience and perseverance knew no boundaries.

 Hooked up for the last time.  Yes, the LAST time!!!

 And Lisa detaching everything for the LAST time!!!
A well-deserved hug - she was just awesome! And oh, I had to take the wig off, it was getting very annoying about half way through the session. 
Christine, me and Joe getting ready to walk out of the center with Christine's phone playing Pomp and Circumstance. 

My labs were ok, not great.  I was hoping to avoid the Neulasta shot, but my WBC was only 5.  It's been going down at least 9 points so I'll go back tomorrow at 1 p.m. for one more stick.  I'll have some bone pain for a few days, probably starting on Saturday.  But it's not too bad - Tylenol has taken care of it so far.  My liver enzymes fell nicely into the normal range so the Tylenol won't be a problem.  But even better, I can safely enjoy a couple of umbrella drinks on the beach or by the pool when we go to Florida next month.  Yesssss!!!  And I am anemic and my protein level is low, so I'll continue to focus on proteins and other iron-rich foods. 

I will have to continue on all of my meds for a couple of months.  Neuropathy can still rear its ugly head, heartburn is still making itself known although pretty well controlled with the daily Pepcid and Prilosec.  I need to continue the generic Valtrex for at least six months as my body will continue to be stressed out for a while - further surgeries, radiation, etc.

So what's next, you ask?  Just a few specialists appointments:

Oct 5 - DIEP surgeon consultation at Faulkner Hospital and drop off radiation records at Brigham & Women's in Boston
Oct 11 - PET/CT scan at River's Edge - part of Eliot Hospital in Manchester, NH
Oct 14 - Radiation Oncology consultation at Brigham & Women's even though Dr. Harris is on staff at Dana Farber

And niece and nephew are coming for the weekend, and then...we are going to DelRay Beach in Florida for a week.  We need a rest!!!

Back in March, I couldn't even imagine the end of chemo without some dire side effects.  But the Dana Farber team listened to my every concern and made the necessary adjustments so that I would suffer as little as possible.  I really couldn't ask for more.

Chemo is a wrap!


Wednesday, September 21, 2011

Your radiation will be complicated!

Those were the words my Dana Farber oncologist used back in May, referring to my future radiation treatment. So today we met with a Radiation Oncologist (RO) associated with a local hospital and there is much to consider.

Here are the "for sure" things...I will have a "restaging" PET/CT scan some time the week of 10/3 to see if there is any active cancer remaining.  I was happy to hear that he wanted this test performed.  He wants to know where I stand, and so do I.  And he wants me to get a second opinion from an RO at Dana Farber (DF).  That was also good news and I had already sent Rick across the hall to the local DF office to request they set up an appointment.  So between these two medical teams, I am sure it will happen, sooner rather than later.

He is recommending irradiating everything - my chest wall, intramammary nodal area, axilla area, and supra-clavical area.  Oh my!  I asked what my risk of recurrence would be if I don't have any radiation and he said 40%.  I asked a ton of other questions, but I didn't ask him what my risk of recurrence would be if I had all the radiation he'd like to administer.  So I need that answer.  It's not 0%, and I suspect it might not be a whole lot better than 30%.  So this is a very important question, because all of this radiation carries significant risks of side effects, some of them quite life-threatening. 

And then there is the dilemma of reirradiation in the area where I had Mammosite rads last year.  He says he thinks it's not a problem because the breast tissue has been removed, leaving the chest wall.  In theory, the chest wall has not been radiated yet.  Really?  Do you really think that little balloon contained all the radiation being emitted from those radioactive pellets they inserted in there 10 times for 10 minutes?  If so, then why did the physicist enter the room with a geiger counter to be sure I wasn't contaminating the room???  Why did my esophagus get irritated for two weeks?  Why did my external breast skin have an area of peeling for a couple of weeks?  I am finding it hard to imagine that there wasn't some "bleeding out" of radiation in there somewhere.  And oh, when I asked Johns Hopkins if reirradiation was possible after Mammosite, their answer was "no."   OK, this is why we need a second opinion.  I guess in this case, it's a tiebreaker third opinion!

Anyone heard about Kara Kennedy (daughter of Ted Kennedy) who just died at the age of 51?  Well it turns out that she had lung cancer 9 years ago.  She got chemo and radiation.  And her death is being attributed to cardiac failure caused by her cancer treatment.  There was a news story on the Boston ABC affiliate this evening about a new oncology specialty - cardioncology and how cancer treatment can kill the cancer but then kill the patient years later.  My RO told me that my risk of cardiac damage is up to 10%  Being a diabetic probably increases that risk; but at least I am not a smoker because then it would be even worse!

Then there is the risk of thyroid damage - one in three!   Oh but there is a pill for that.  You just take Synthroid and all will be OK.

Radiation Pneunomitis is another fun SE.  I don't remember the risk percentage, but it can happen anytime up to a year after finishing rads.  I could develop a permanent dry cough,  shortness of breath, fever, and if it persists long enough, permanent radiation fibrosis, which is not reversible.  Oh, but pneumonitis can be treated with steroids. 

Rib fractures can occur anytime after radiation, for years to come.  There is just a small risk, about 1%.  Of course, that can be helped with pain management.  But it comes as a result of loss of bone density in that area, and there's not much that can be done about that.

The risk of  permanent lymphedema is significantly increased with radiation of the axilla area.  And the RO suggested a boost, which would increase the risk even more than the 20% risk I already have.  There is some research that the boost is not worth the risk. Need to do a bit more homework on this one.

There is also a risk of Radiation-Induced Brachial Plexopathy, which is caused by radiation damage to the brachial plexus, a network bundle of nerves located near the neck and shoulder. The nerves forming the brachial plexus originate at the spinal cord in the neck and are responsible for the sensory and muscular innervation of the entire upper extremity.   Damage occurs 2 - 5% of the time and, whoa, for a change it's good to be an older chick.  Younger women seem to be more vulnerable.  The bad news is there is linkage between this and the lymphatic system. 

OK, that's enough.  You wouldn't take an aspirin if you ever actually read the little package insert that, in very fine print, gives you all the potential damage it could cause.  Suffice it to say, radiating 25% of my body mass comes with some pretty significant risk potential. 

The next issue is the timing of events.  My preference is to have DIEP reconstruction, spend six weeks healing, then start radiation (however it is going to happen).  Afterwards, there will be at least one more surgery for DIEP and maybe two, depending on how things go, how much I want to have done, and when they create nipples.  (Hope this is not TMI for anyone.)  With any luck, I'd be done by mid 2012.  Of course, the RO wants me to do rads first and he now off on a mission to find any clinical evidence that the order of things matters.  I don't think he will find anything as I have read in several medical publications that it doesn't matter, that there is no "Level 1" evidence that it makes a difference.  If I do rads first, I will have to wait 4-6 months before DIEP can begin.  And there is risk of vascular damage which could then make DIEP a non-option.  And I would not finish all the reconstruction until the end of 2012.  Remember I started this trip in June 2010...I'm ready to see an endpoint!

But what does matter, a life or death matter, is the accuracy of the radiation treatment.  If it's not done exactly right, in the exactly right places, everywhere that it is needed, then there is no benefit at all to doing rads.  Mess up one thing and you just messed up someone's survival rate.  And guess what can interfere with the accuracy of the radiation measurements...the very tissue expanders that I currently have as part of the initial reconstruction after my mastectomies.  Yup, those little devils can throw off the geometry.  They're plastic, they're full of water, and they jiggle.  That means they can and do change position.  And they change the curviture of the chest wall.  So I really want those SOBs out of there!  And the only way that happens is if I have DIEP first.  And DIEP can be first only if my PET/CT scan comes back clear. 

So you see, it isn't just complicated, it's DAMN complicated! 

Wednesday, September 14, 2011

Chemo #7 is history and I'll be done in two weeks!

This point looked so far away last April when I knew I'd have to undergo chemo, there was no escaping it, and I realized it would be a rough road.  But here I am, almost exactly six months after receiving the call that my cancer was back, and the chemo finish line is two weeks away.  And I'm still standing!  Thanks to an oncologist who really listens to me, a fabulous chemo nurse, and the rest of the staff at the Dana Farber satellite clinic in Londonderry, NH, my side effects have been manageable, my experiences have been relatively painless, and the end of my chemo journey will end T minus 14 days and counting!

My labs were better today.  My blood counts were all acceptable although I am anemic and that explains the fatigue.  There was good improvement in my metabolic panel numbers, including the liver enzymes.  I met with the PA today and he told me I could enjoy an occasional adult beverage without worry, and I can take Tylenol for any bone pain I might experience.  I had some pain after the last treatment and rode it out because I didn't think I should take Tylenol.  But he told me not to worry, that I'd have to take a whole lot for a long time before any damage would occur.  The pain gets a little tiring and interrupts my sleep, so I'll take it as needed.

We talked about genetic testing and he was surprised that no one had yet talked to me about genetic counseling.  So at my last treatment, they will draw blood for the BRCA test (BRCA Genetic Testing Explanation) and we will meet with the DF Genetic Counselor on 11/30.  As far as I know, I have just one great-aunt who had breast cancer.  The good news is that she lived to be 102, outliving her 8 other siblings!  There may or may not have been others, our families were not very close so I wouldn't have heard about any other cancer.  My girls need to know if I carry the gene.  I may as well have this test performed this year, while I am still in the "deductible fulfilled" status!  Who knows what changes will come to our insurance plans in 2012. 

Christine accompanied me to treatment today.  We had grandiose plans to make popcorn right there in the chemo lounge, then pass out popcorn to the staff and patients.  But we did ask first if it would be OK, and we were told that 1) permission from the electrician would be required to use a popcorn popper; and 2) the smell of cooking popcorn might be nauseating to some of the patients.  We had talked about that last night and thought maybe we could make it in a downstairs breakroom area.  But the floor nurse supervisor was not in favor.  But Christine would not be denied; she took everything back to our house, made popcorn, put it in movie-theater-style cups, and then drove back.  It was mission accomplished!  We handed out popcorn and candy while we watched "The Waitress" which was a very nice light romantic comedy, perfect for the two of us.  Rick stopped by with lunch for Christine and hung out for a while then headed back to his home office. 

We've decided that they don't quite know what to make of us...we are a lively group and trying to have some fun while being "stuck" literally for up to seven hours.  Today we arrived at 8:30 and we left about 3:15 so it's a long, long process.  It seems like we spend much time waiting for the next step, so we definitely have time to kill.  Having some company, planning something fun makes the time go by a little faster, and we usually make people smile.  

Wait until they see what we "cook up" for that last treatment!  They "ain't seen nothin' yet!"


Tuesday, September 13, 2011

Music to my ears!

"You are a candidate for DIEP"

Now that is exactly what I was hoping would come out of my consultation today with my plastic surgeon, Dr. Charles Hergrueter.  By the way, here are his credentials:

Dr. Charles Hergrueter

I have an appointment on October 5th to see the DIEP micro-vascular surgeon, Dr. Stephanie Caterson.  Her credentials are quite impressive:

Dr. Stephanie Caterson

And she looks younger than my daughters! 

Actually, Dr. Caterson performs surgery in tandem with Dr. Matthew Carty which significantly reduces the length of the procedure.  These two talented surgeons are two of only four micro-surgeons in the Boston area that perform DIEP reconstruction.  So while I am getting in for my initial consultation relatively quickly, it may be 2012 before I am on the schedule.  If it happens sooner, I'll be thrilled. 

Dr. Hergrueter also suggested that I get an appointment with Dr. Jay Harris, who is the department head of Radiation Oncology at Dana Farber.  My radiation protocol will be complicated and I want a doctor who has dealt with someone who has experienced a recurrence after receiving Mammosite radiation. 

Dr. Jay Harris

The credentials of all these doctors gives me confidence that I will have excellent care. 

I have to admit to some regret at not having pushed for this reconstruction method about five months and 12 pounds ago!  I should have gotten a second opinion before agreeing to the tissue expander method.  But cancer was calling and I was afraid to keep it waiting, as it was a very aggressive and unwelcome visitor.   I didn't have a whole lot of time to research, and I couldn't see myself without some kind of immediate reconstruction. 

So what is DIEP?  DIEP (deep inferior epigastric perforators) flap surgery is a cutting-edge breast reconstruction procedure that uses a flap of complete tissue - blood vessels (perforators), skin and fat - from a woman’s lower abdomen as donor tissue. The flap is then transferred to the chest, where the surgeon, aided by a microscope, will attach the donor tissue blood vessels to the chest blood vessels and reconstruct the breast. This delicate procedure provides significant benefits, such as a slimmer appearance, a natural-looking breast, maintained core strength and a quick recovery.

Or in simpler terms, they take tummy fat and skin, relocate it to the chest and build a breast or two.  Besides avoiding implants with a lifespan of 15 years, you get a tummy tuck!  And after five pregnancies, I could use a tummy tuck!

OK, enough about reconstruction...tomorrow I am undergoing chemo treatment #7 of 8.  Taxol is proving itself to have some different side effects, with a little bone pain, elevated liver enzymes and heartburn being about the worst.  Also, fatigue has become more noticeable with each treatment.  But I can see the finish line and it's 15 days away!


Thursday, September 8, 2011

It's a miracle, they've seen the light!!!

I got a call from Dana Farber this afternoon and all I can say is "it's about time!"  The financial advisor, Michelle Patch, and my angel chemo nurse Lisa have spent countless hours on the phone trying to get my insurance company, Anthem Blue Cross/Blue Shield of California, to approve my getting the Neulasta shot at the DF satellite clinic in NH.  For some odd reason related to billing codes, Anthem has been stubborn (and I'm trying to be nice) in understanding that the satellite clinic is not the main Dana Farber Hospital in Boston.  So every time I've needed the Neulasta shot, Lisa and Michelle have worked the phones to get approval for me to have the shot, on a one-time basis, so that we wouldn't get stuck with the hefty bill if Anthem decided not to cover it.  I was perfectly willing to take pictures, video, whatever and provide it to Anthem.  You'd think they would realize that this clinic is like hundreds of others across this country - satellites of bigger hospitals set up to take care of chemo patients. 

So yesterday I placed a call to Lori, my RN case manager at Anthem, and said that we needed to get this resolved so that no one would have to spend any more time on this ridiculous issue.  She called me earlier today and promised to try and resolve it.  Well, hallelujah!  I got a call from Michelle at DF and I am now approved for up to four more Neulasta shots.  And Lori told me that Anthem is no longer allowed to deny payment because of where the shot is administered. 

It took a while, but common sense actually won out this tine! 

Tuesday, September 6, 2011

We are tough cookies!

Someone on one of the discussion boards let out a "primal scream" yesterday.


Message heard, loud and clear!!!

I think we all HATE CHEMO! No one feels "good" on chemo, unless you count the ability to get up and semi-function as "feeling good."  We're just putting one foot in front of the other, showing up for treatment like good warriors, and dealing with the aftermath as best we can.

I think, for me, the big "revelation" in all of this is that I have been able to get through it without it killing me. Because, honestly, I thought it would, for sure! Everyone uses the word "doable" and my thoughts were that, yeah, going to war and coming home minus limbs is "doable" because the human body and spirit are so resilient. But doable doesn't mean you would want or choose to do it!!!

I guess the one thing that has kept me going is that I was determined to not let chemo keep me from living my life, spending time with my family (after 20 years of living away) and to the extent possible, enjoying all the things I like to do, or eat, or see, or whatever. With just 2 Taxols left, I have managed to keep on keeping on! Yeah, I've had lots of SEs but I have found there's a pill to minimize almost every one of them except the hair loss and fatigue.  If you are what you eat, I am a toxic waste dump at the moment!

I know that my journey is not what many of my BC sisters have experienced. That is the reality of our human bodies, though. We are all so different, we all process things differently and our bodies all react differently. I learned this first by being diabetic and understanding that one food would raise someone's glucose while that same food would be fine for another diabetic.  Many of my sisters have marveled at my ability to do as much as I have done in the midst of treatment, to take care of things for my mom, to host and enjoy family gatherings (which would not be possible without everyone pitching in, by the way) and generally to be as "normal" as possible under the circumstances.

The thing that has amazed me most (although I think my family had more confidence in me than I did) is that I have been able to face all these challenges with way more courage than I ever thought I had in me. I've never, ever thought of myself as courageous, brave, whatever descriptor you like to use. Perhaps I wasn't giving myself enough credit for being a "tough cookie". I remember people saying that about my grandmother - that she was "tough" and could handle anything thrown her way. And now I know that I am tough, resilient, and all those adjectives that would describe someone who has battled a ferocious opponent.

I am not yet ready to call myself a survivor, but I am a fierce warrior!
We are all tough warriors in this battle, and we will march on as we must until we can claim victory.

Man your battle stations, ladies! We've still got some work to do kicking cancer's a$$!


Wednesday, August 31, 2011

Chemo #6 done...75% complete!

I am home and relaxing after finishing my 6th treatment (2nd Taxol) and I am 75% complete.  I can see light at the end of the chemo tunnel and it is calling me like a lighthouse beacon! 

Christine and Allison were with me today, and they made the 6 hour marathon go by quickly.  They went in with me to see the PA and he asked if we were all on!  We played cribbage, they went to lunch then brought back clam chowdah and homemade "no sugar added" apple pie from a nearby apple farm, and some iced tea (which turned out to be quite the hunt - the restaurant had no "to go" cups!)

We are thinking about "movie time" for the next session.  Popcorn, Milk Duds, and a chick flick should help pass the time.

Because I tolerated everything so well last round, they reduced the Benadryl from 50 mg to 25 mg.  I am not using the Scopolamine patch (unless I end up needing it) because I had zero nausea last time.  And so far, I don't have any significant neuropathy.

My White Blood Count was 3 which is pretty low.  It was 12 last time, so I didn't get Neulasta.  In theory, Taxol doesn't tank the whites.  But since I have just 3 left, I can only surmise that I would be in the "nothing left" category by my next chemo session.  And I don't want anything to delay Day One of PFC (Post Final Chemo or as many warriors like to say, Post F#$#ing Chemo). 

 And then, the ever-accommodating Financial Advisor, along with my chemo nurse, spent half the day trying to get approval from Anthem BC/BS to give me the shot tomorrow.  Anthem has no problem with me having the shot.  But they want DF to order it from a specific pharmacy who would overnight  the drug.  Then once it arrives they would dispatch a nurse to do the injection.  But...they cannot guarantee that it would arrive in time to get the nurse here within the 72-hour window when the Neulasta needs to be injected, in order to be effective.   Apparently, Anthem is the ONLY insurance company that DF deals with that cannot understand that the New Hampshire facility is a satellite clinic and not a hospital.  Let's hope this is the LAST Neulasta for me!

Monday, August 29, 2011

Chemo, Rads, Recon...lots coming up.

Chemo #6 is coming up on Wednesday and this will be the 75% completion mark.  Christine and Allison are going to keep me company, giving Rick a break.  I think Christine is looking forward to seeing me under the influence of drugs, especially when I described how I felt after they infused 50 mg of benadryl right into my veins.  I do intend to ask if they can cut that dose in half as I had no reaction from the first infusion.  Granted, one can develop an allergic reaction to anything at any time.  But they could always stop the infusion and give me the rest of the benadryl if that were to happen.  If they are not willing to reduce it, then I plan on taking a nice long nap while I have that 3 hour drip, that 3 hour drip!  I suspect there will be pictures and/or videos for posterity's sake...hehehe.  I continue to tolerate chemo much better than anticipated.  I do have a few side effects, and I have a pill for each and every one of them!  About the only one for which there is no easy fix is the fatigue, which seems to abate a little after the first week.  Chemo effects are cumulative, and I will probably feel a bit more fatigue as I get closer to the end of chemo.  But I can deal with that easily enough.  Well, with the help of another little pill!

And oh, I pill for the hair loss.  While I still have plenty of stubble on my head, and fuzzy longer hair on my legs (what's that all about???), my eyelashes and eyebrows are slowly disappearing.  I'm hoping I keep enough of my brows to figure out where they are supposed to be - eyebrow powder does wonders. I'm not going to even try to apply fake eyelashes, I'll let eyeliner and my glasses disguise that problem. 

I now have three appointments with the Plastic Surgeon for tissue expander fills.  The first is in about two weeks and will include another discussion about DIEP.  I've just about resigned myself to  "it's not gonna happen" because I haven't gained any weight on chemo and I'm not going to try to gain weight so I can have fleshy boobs rather than implants.  I've had some recommendations to get an opinion from the DIEP experts in New Orleans. 

 Center for Restorative Breast Surgery

The facility and doctors are some of the best in the country.  It's not covered by our insurance, though.  And the travel expenses would be excessive...and I'm not going to New Orleans unless I can have fun!  I will ask for a referral to a DIEP surgeon in Boston, and I am sure there is a good one somewhere within the fantastic hospital networks.  This question will get answered, once and for all.  If it's just not going to happen, I will mentally "move on" and have additional fills to get to my desired bra cup size. 

By the way, have I mentioned how much I really detest those expanders?  They are never comfortable.  Not ever.  They are omni-present, day and night.  I will rejoice when they are gone.  Seriously rejoice!  Every single woman who has to go through the expander process feels the same way.  Some day there will be a better way. 

And then there is radiation, the "complicated" radiation that will require a highly skilled radiation oncologist.  I posed my radiation question to Johns Hopkins, where a JH Nursing Professor responds to individual's questions about breast cancer treatment, options, etc.  I had sent an email to her because their website was malfunctioning and today I received a personal response.  This lady, Lillie Shockney, is a saint - you can only imagine the number of questions that are submitted via the website, never mind all the other methods of inquiry.  She confirmed my thoughts, and here is a quote from her response:

It will be a bit complicated because there isn’t good research yet to direct radiation oncologists regarding this. it makes sense though that since you had mammosite and therefore your axillary node area and intramammary node areas were NOT previously radiated that you should be able to get that radiation done this time, which is also where you need it most. If you want to come to us for an opinion about this call 410-955-8964.

The bottom line and current "standard of practice" is that you can only radiate an area one time.  Everything I have read confirms what she says.  I was not able to find any clinical trials in the US that seem to be working on this issue.  Well, we know what to expect, we know what questions to ask, and we need to find "the best of the best" radiation oncologist. 

By the way, we survived Irene!  She lost most of her punch by the time she arrived at the lake.  But saturated ground caused lots of fallen trees and lots of power outages.  Ours went out around 11:00 a.m due to a transformer blowing out, and was restored sometime between 5:30 and 8:30 (we left to go out for dinner with the family).  We were mighty happy to get home to tv, lights, and functional flushing of toilets.  I think we might have been on the search for a hotel room if we'd returned after dinner to continued darkness and no running water.  Not sure how much longer before Rick would have been displaying symptoms of tv!  And I am not sure how much longer I was willing to tolerate dumping a bucket of water into a toilet to facilitate flushing, not to mention the thought of not having a "certain" morning shower. 

It will be a very busy September!

Thursday, August 25, 2011

Free Kindle Reader application, Free ebooks

I was going to post this on the Blogger Babes site, but then I decided that some of the Blogger Dudes might be interested in this, too.

You can download the Kindle application for your laptop, iPad or smartphone, for free, from Amazon:

Then every day Amazon is giving away ebooks, you just download and read.   Sign up here.  You will need an Amazon account to do this, but that's easy.

I have been getting my free book notifications through Facebook.  You can do it that way or get an email, whichever you prefer.  There have been some highly rated books that they are promoting, and there is a wide variety of genres.  I know some of you like the smell and feel of the hard copy book, but it's hard to pass up free.

I hope you find something you like!  I've downloaded quite a few.  I can't read outside on my laptop due to the kids are already talking about getting me a real Kindle or other eReader for Christmas.  I've promised not to buy one in the meantime. 


Wednesday, August 17, 2011

Wow! I've had quite the hangover...

too bad there was no real partying involved, just a little benadryl.  Well, maybe, a lot of benadryl - 50 mg dripped right into my veins.  And that stuff scrambled my thoughts and slurred my speech!  I haven't felt like that in more than 20 years.  I guess the good news is that I won't suffer the "hangover" that would accompany a real drinking binge.  I wanted to sleep, I really did.  I think the chemo nurses were taking bets on when it would happen (I've never slept a wink during a treatment), they thought I slept because I had my eyes closed a couple times.  But nope, they were wrong!  Damn steroids!!!  I think there was a battle royal going on for control of my "inner sleep" and the steroids won out.  Joe and Rick were my company; and like a good hostess, I kept talking even when I had to close my eyes and try to slowly form my sentences. 

And oh, the thirst!  With all that benadryl, a claritin this morning to ward off bone pain, and a scopolamine patch, I am drinking everything in sight.  And I had a nice bowlful of grapes...after I slept.  Yes, once we got home, Rick went up to work for a while; I turned on the Food Network, and slept for about 45 minutes.  I woke up with much less fog but a bad case of cotton-mouth.  I ate a bowl of red grapes that were really delicious, nicely crisp (thank you Idylwilde Farms).  Rick brought me some dinner and I am still drinking.  

We arrived at the center at 10:00, they took me to the Infusion Center right away, then accessed my port and drew blood for the CBC.  Then we waited for a while - they were busy, the doctor was busy and it was after 11:00 before we saw Dr. Walsh.   She finally appeared and we talked about how I was doing (which is much better now that the horrible fatigue has abated).  She asked me what supplements I had heard to take, I told her Vitamin B-6, L-Glutamine and Acetyl L-Carnitine.  She nodded her head in approval and I asked her to see if she could find out how much ALC they were using in the ongoing clinical trial to determine if it prevents neuropathy (the answer she got is 500 mg 3 times a day).  Hopefully, these things will help keep those nerve endings nice and healthy. 

We talked about all the pre-meds including the anti-nausea meds that she would order.  I'm a big believer in "if it's not broken..."  I was happy to hear that the anti-nausea meds would all remain the same.  And there was no change in the Decadron - just 6 mg - which also pleased me.  In addition, I would receive Pepcid (apparently Taxol can cause some serious heartburn) and the Benadryl.  Taxol is one of the Taxanes (Taxotere and Abraxane are a couple others), which is made from the Pacific Yew tree.  Because of the solvent that is used with Taxol, it can cause severe allergic reactions almost instantaneously.  But like everything else so far, my body didn't overreact and seems to be tolerating the chemical onslaught fairly well.  I do think I'll ask for less benadryl next time around. 

We quickly discussed my "complicated" radiation situation and she set up an appointment with
 Dr. Matthew Katz   I'll be seeing him the week between my third and fourth Taxol treatment. 

And now...drumroll please...the numbers.  My tumor markers (normal is 38 or below) were 64 in April and are now down to 42, almost there!  My white blood count has recovered nicely and is once again just above the high end of the range.  And my red blood count is staying right where it's been, just below the low end of the range but not too bad.  Dr. Walsh said that she has  never had a patient's WBC tank enough from Taxol to need Neulasta, so I am very optimistic that I will get through the next three treatments on time with no issues.

For my diabetic friends or any others who are interested in the neuropathy clinical trials and might want to try Acetyl L-Carnitine, here's a link:  Neuropathy Clinical Trial

And last but certainly not least, I want to thank the Good Wishes Program of Franceluxe for the beautiful headwrap they sent me, at no charge, along with a greeting card personally signed by each staff member.   And my name and city is on the wall of their offices, along with that of each person to whom they have sent a free headwrap or scarf.  It's a fabulous program and they are providing a beautiful service.   Rick teases me because I said I would never wear a scarf or headwrap because I thought it made me look like a cancer victim.  But that headwrap is beautiful (thanks to all of you who complimented the wrap), and comfortable, and I am going to wear it proudly, especially when he is wearing one of his "comfy" but not my favorite tshirts.  You see, he told me that he prefers me in a wig or a pink ballcap; I told him I prefer it when he wears a golf shirt.  He has lots and lots of golf shirts and tshirts, I have one headwrap and a handful of scarves.  This could make for an interesting and fun wardrobe battle!!! 

Five down, three to go!

Tuesday, August 16, 2011

We missed the race, but we were represented!

They walked for me!
I don't remember exactly what year it was, maybe 1996 or so, when our friends John and Donna told us that Donna had breast cancer.  It was a shock, of course.  She was very young, not even 40 I think (sorry Donna, guestimating at some of this).  Shortly after, Donna asked us to walk with them in Kansas City's Komen Race for the Cure; and thus began a long tradition of friends getting up very early that Sunday in early August, the guys passing on their usual tee time, and along with a few other family and friends we met at the race location and participated in the Race for the Cure.  Donna and some of her family always did the 5k; some of us occasionally did the shorter version.  But we always did it - we started out together and we met up afterwards for breakfast.  It was a fun atmosphere, even though the reason was serious.  And it was even more serious when Donna had a recurrence and threw the proverbial "book" at her second bout.

 Donna became very active in the Komen Foundation and even walked in the Washington, DC, event which was ginormous by KC standards.  She had a lot to do with how the Kansas City event grew over the years.  She and her fellow volunteers organized a survivor event, which I attended with her last year after I, too, became a survivor. 


I got involved in small ways.  I volunteered to help distribute team race materials for two years.  One year I brought our friend Angie, who was a survivor and had never participated in the race.  By chance, she was interviewed by the local press as we walked the race and ended up in the local newspaper.   And I had a lady who worked for me - Bev.  Bev had been a Stage IV survivor for more than a decade and was not doing so well that August.  I wanted her to see how many people were out there, supporting the cause, to find a cure.  She didn't have enough energy to walk, but Bev and I climbed up to a crossover and got a view of more than 20,000 people that year.  And we did get her to the survivor parade.  She ALWAYS wore a smile. 

Breast cancer has taken both of these brave ladies. 

Some people complain about Komen, they think they've gotten too big, they think they've cheapened the brand by letting too many businesses use "for the cure" and they are spending too much money fighting a lawsuit to protect their brand.  I'm not sure how I feel about all this "political" stuff.  What I do know is that up to 75% of proceeds from local races remain in the community for breast health screening, education and local research projects. 
Kansas City 'Races for the Cure'

And these races give hope and put smiles on the faces of hundreds of thousands of survivors across this country.

Maybe next year!

Sunday, August 7, 2011

Farewell, my friend Janet

She always had a smile.  You could see it through cyber-space even when you couldn't see it in person.  You could feel it in her postings, when she talked about her family and even when she called me to tell me of her diagnosis and how she was ready to fight.  I can feel the warmth of her smile now, as she has completed her journey here on earth and is smiling down from the heavens on all her family and friends.

Wednesday, August 3, 2011

I am so lucky!

I finished AC #4 today, hitting the halfway point for the chemo part of this long journey.  Yes, it is long.  When I am finished with reconstruction sometime next year, it will be more than two years.  But I am lucky because my body has not failed me.  I have remained strong enough to be able to travel this road, despite my initial concerns about chemo and its ability to cause some pretty serious side effects.  Yes, sometimes I feel like my body has become a toxic waste dump because for every side effect, there is a pill! 

But at least I have the opportunity to put up a fight, to give it my all, and hopefully kick cancer's a$$.  I have a friend, someone I met through a diabetic blog that I have participated in for several years.  I've met this friend in person, twice, when I was in Florida.  The first time was a business trip that I extended for a weekend, and she drove to me and we had a great lunch.  The second time was this past February when we had a family trip to Disney World.  She and another lady from our blog met me in Orlando for lunch.  Each time we had lively conversations, as if we'd known each other for years.  And in a way, we had.  Diabetes may have brought us together in the first place, but sharing everyday life, family,  special moments...those are things that have made us a close-knit group who really, really care about one another. 

When my friend found out that she had a very aggressive cancer that had spread to her liver, she reached out to me.  She wanted my help to advise her on treatment options, to support her.  I was so honored to be among those that she was trusting, essentially, with her life.  It was a big responsibility, one that I took to heart. 

But the body is unpredictable and cancer can wreak unthinkable devastation before you even know it's there.  My friend's kidneys shut down this past weekend, and her body can take no more.  She can no longer fight this demon, the damage is too great and there is now nothing but comfort and support for her and sadness for her family and friends.  She is a wife, mother, and grandmother - a very proud one who took great pleasure in her family, especially the family cruises that she organized.  I remember her being thrilled that she had found matching t-shirts for the entire family, and she shared a picture of the whole family sporting their shirts on this year's family cruise.

She and her family are very strong in their faith and I am sure that trust in their God will help them as she goes through this transition.  It won't be easy, but they all have beautiful memories that will help ease the pain.

I am so lucky - I still get to fight the battle, win the war and make more memories. 


Wednesday, July 27, 2011

Uncooperative bone marrow!

Well, this is a little disappointing.  My white blood count was way too low this time (1.2) so I couldn't have treatment today.  So much for being double the high before the last treatment.  They couldn't give me Neulasta because I was too high.  Now I am way too low.  So my last AC treatment is delayed until next week. 

Need to avoid sick people for a few days.  I am at my "nadir" (low point) and should recover on my own in time for next Wednesday's appointment. 


Tuesday, July 26, 2011

I believe - a cool flash mob video

A friend sent this to me and it deserves to be forwarded and viewed.  I think I am going to have to add "participate in a flash mob" to my bucket list!

Here are the lyrics by Yolanda Adams, hopefully I am not violating any copywrite laws:

"They said you wouldn't make is so far uh uh
And ever since they said it, it's been hard
But nevermind the nights you had to cry
Cause you have never let it go inside
You worked real hard
And you know exactly what you want and need
So believe and you can never give up
You can reach your goals
Just talk to your soul and say…

"I believe I can (I can)
I believe I will (I will)
I believe I know my dreams are real (know my dreams are real)
I believe I'll stand (Oh yea)
I believe I'll dance
I believe I'll grow real soon and (That's why)
That is what I do believe

"Your goals are just a thing in your soul uh uh
And you know that your moves will let them show
You keep creating pictures in your mind
So just believe they will come true in time
It will be fine
Leave all of your cares and stress behind
Just let it go
Let the music flow inside
Forget all your pain
And just start to believe

"I believe I can (I believe I can oh yea)
I believe I will
I believe I know my dreams are real (All of my dreams are real)
I believe I'll stand
I believe I'll dance (I gotta dance)
I believe I'll grow real soon and (ooo)
That is what I do believe
Whoa oa oa YEA…

(Music break)

"Nevermind what people say
Hold your head high and turn away
With all our hopes and dreams
I will believe
Even though it seems it's not for me
I won't give up I'll keep it up
Look into the sky
I will achieve all my needs
I will always believe….OoOo

(Chorus 2x)
"I believe I can
I believe I will (I can)
I believe I know my dreams are real (I got strength)
I believe I'll stand
I believe I'll dance (I gotta dance)
I believe I'll grow real soon and (watch me watch me watch me)
That is what I do believe (I do believe in me)

"I believe I can
I believe I will (oh yea)
I believe I know my dreams are real
I believe I'll stand
I believe I'll dance (I gotta dance)
I believe I'll grow real soon and
That is what I do believe (I do believe! yayeeyay)"

Sunday, July 24, 2011

Live life, every day, as best you can!

I'm sitting outside, looking at the lake and enjoying the evening breeze and listening to the folks next door having a good time enjoying each other's company.  It's been an almost quiet day here today, with the exception of a pleasant visit with my niece Lisa and her adorable daughter Isabelle and breakfast out this morning with hubby at Sammy J's, with a reputation as Salem's best breakfast.  Yes, it was really good.  The best in Salem?  Well, I have no basis for that statement just yet.  We haven't been here long enough to have sampled breakfast hot spots.  As a matter of fact, this was our first Salem breakfast since moving here.  We did, however, have the very best homefries we've ever had!  And they know how to poach an egg perfectly for eggs benedict.  So that says something about Sammy J's and you can be sure we'll be going back for a second try. 

We've had so much fun this past week.  Family and friends have blessed us with their presence repeatedly, taking advantage of our spectacular lake location to enjoy a cooling respite from the heatwave that brought record temperatures (103 on Friday).  We had 9 people here on Thursday, 3 on Friday including our darling little granddaughter who had her first solo sleepover at Grandma's, 17 on Saturday and then 2 today.  Tomorrow evening there will be a few more! 

I am incredibly grateful that after three chemo sessions, I am physically and mentally able to enjoy life.  And I do mean enjoy!  Granted, I have a couple days after each session where I'm not at the top of my game.  But I am lucky that I don't have to head to my bed and become a recluse while I recover from the chemical onslaught.  And I am lucky that my immune system has been sturdy enough that I don't feel the need to avoid crowds, fresh fruits and veggies, or take any abnormal precautions beyond the norm - don't eat something that has been licked by a sick kid!!!  And I am lucky to have an oncologist who listened to all my concerns and fears about chemo, rational or not, and took every precaution possible to balance the need for pre-meds with a concern for my glucose levels. 

Today I took the time to open a "coffee table" book that someone gave me a few years ago.  It's titled Off the Beaten Path - a travel guide to more than 1000 places here in the USA that are worth visiting.  There are probably 150 locations within a two hour drive of us right here in New England so we have some touring to do!  I've always had a love of visiting neat places in this country.  Even when we lived in the Kansas City area and it seemed that you couldn't really change your geography unless you drove for several hours, we would rent or borrow a motorhome and go off to see the majesty of the Grand Canyon, Mount Rushmore, Zion National Park and many other of Mother Nature's delights.  Or we boarded a plane to Hawaii or Florida, cruised to Alaska, took a road trip and golfed the Robert Trent Jones Trail in Alabama.  And we made trips back to visit our family, frequently by some standards.  Even though we both had demanding full time jobs, we made the time to live life, enjoy what we loved, and never passed up an opportunity to do something that sounded like fun, even if it was a last minute idea and we needed to be ready to go in 15 minutes. 

The good news is that neither diabetes with its dietary constraints or  cancer with its demanding schedule of doctors, treatments, physical therapy, more doctors, etc., has changed any of that.  If I get an opportunity to do something, I'm doing it!  If someone wants to go to dinner, or get a pedicure, or come for a visit, I'm in.   I'm never too tired, it's never too late (or too early these days) to be on the go, to do something interesting, to visit a beautiful location, or to learn something about this country. 

Some day it will happen.  I won't be able to go or do or whatever.  At some point in my life, through natural aging or some unfortunate turn of events, I will have to stay home, to say no, to say I'm too tired.   But not yet, not this gal.  So don't be surprised when you hear what I'm up to, because that's just me being me!

So, what about you?  What are you getting out of life these days?  I hope it's everything you really want and everything you really need.  Because you never know when something will happen and you can't.


Wednesday, July 13, 2011

Three ACs done, one more to go...

...then on to 4 Taxols, which I hear is easier.  So far, I am feeling pretty good, just a little tired but not too bad.  Today's bloodwork revealed a nice high white blood count, so I won't be having the Neulasta shot tomorrow.  One less doctor visit, one less needle stick, yippee!!!

Rick had to be in Pittsburgh yesterday and today, so Christine came and spent the night, and then took me to my chemo session.  Allison met up with us last evening and we had a nice "girls night" with some wine and tapas.

 Here we are this morning, totally armed for battle!  Donna, it's definitely cooler without the wig!  Christine found these tshirts online at, in case you were wondering.

So, one more AC and then on to Taxol.  I hear that T is easier, but I was also told today that just the chemo infusion, not counting any hydration or premeds, takes 3 hours.   Yikes, that means my visits with Nurse Lisa will probably be even longer.  Today's visit started at 10:15 and we left at 3:00.   The first chemo started at 12:30.  So it will be at least 30 minutes longer.  Oh well, at least I'm not getting weekly T, which is what many patients are doing these days.  I think I would soon tire of that drill.

Enough about chemo, let's talk about The Prouty and how much we enjoyed ourselves Friday and Saturday!  We drove up to White River Junction, VT on Friday night, which is about 10 minutes from Hanover, NH, the site of the event.  We had decided at the last minute that we should drive up the night before, so we left Salem at about 4:15 and stopped at a nice restaurant in New London, NH for dinner.  Before eating, we visited a local art shop and I found a delightful, whimsical little coffee mug.
Sam Wild Pottery  
Saturday morning I was up early, as usual, and so we drove to Woodstock, about 15 minutes away, and had a fabulous breakfast at the Mountain Creamery, a little place on the main drag that makes use of local farm products, real maple syrup and homemade breads.  It was the best breakfast we've had in years and we were very happy that we had passed on the hotel's "free" breakfast.  

After breakfast we drove around a little, explored this covered bridge, built in the 1830's and one of the oldest in Vermont.  The size of the lumber was very impressive!  We didn't have a whole lot of time to explore but we did enough to wish we had stayed at any one of a number of B&Bs.  What was I thinking when I used Hotwire to get a routine hotel room???  Next time, and there will be a next time!

Our riders, ready to roll!
We made our way back to Hanover and The Prouty.  It was a beautiful day, the event was nicely organized, and six of our family and friends took off for a 35 mile ride at around 11:30.  Alex on his scooter, Rick and I followed a sidewalk path that paralleled the last miles of road bringing the bikers to the finish line.  We didn't go too far, the downhill after 1/2 mile looked nasty and I knew that I would struggle to make it back up if we went further.  And it worked out well because Christine had trouble with her bike and found us as she headed back to the grounds.   We walked around, grabbed some food, took part in a radiation research project involving donating fingernail clippings, and enjoyed the live band.   We worked our way to the Finish line and our team members started coming through around 2:30.  By 3:00, everyone was finished, eating and recovering.  It was a great cancer fundraiser, a spectacular day with mid-70s, lots of fluffy clouds, a breeze and low humidity.  Everyone had a great time!  And thank you, Christine Sweetser, for putting Team Hope together and encouraging everyone to have a good time. 

As we drove home, we promised ourselves that we will go back frequently.  It's less than 2 hours to the VT border, the scenery is spectacular and the choices of restaurants using local farm products and interesting artisan shops are almost endless.  Oh, how we were reminded how much we love the area!

Our Lady of the Snows, Woodstock, VT

Monday, July 4, 2011

Happy Independence Day!

Just checking in to wish everyone a safe, happy and thoughtful Independence Day.  We are having a few family and friends over this afternoon for some smoked ribs, beans, cole slaw, watermelon and whatever else our guests contribute to the picnic.  It will be a good time, and I'll let everyone else do most of the work.  I'm noticing a little more fatigue this time around...or I'm just trying to do more because I'm generally feeling pretty good.  Either way, I'll try not to overdo.

Rick buzzed my hair down to stubble on Friday night.  It was coming out in handfuls and I wanted to just get it over with.  But, surprisingly, quite a bit is hanging on for dear life!   At day 20, I was expecting my head to be smooth as a baby's butt.  I'm sure it will come, but apparently not quite yet.  The lint roller is doing a good job capturing the loose stuff so I am not shedding everywhere.

Yesterday we drove to Narragansett, RI, to spend the day with our friends Ann and Jack, John and Kara and their two children Jessica and Jackie-boy.  It wasn't beach weather, unfortunately.  But it was lovely weather for hanging out and enjoying everyone's company.  We did walk down to the beach in the afternoon so the kids could play in the sand for a bit.  The roses, hydrangeas and day lilies were in full bloom and it was a lovely walk, although the uphill return trip wore me out a bit.

Enjoy the day!