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  My eyelashes are completely gone and my normal eyebrows have been replaced by a crop of colorless hair whose only purpose seems to be to give me a little clue where I should be attempting to add some color.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$$!