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January 21, 2015

Yesterday I had an echocardiogram. I’ve had EKGs before but not this ultrasound 2D view of my heart.  It was very cool to see all 4 chambers of my heart pumping and hear the valves working.  I also learned a new term – ejection fraction, which is a measure of how well the heart is pumping with each beat.  Generally, the number quoted is for the left ventricle, the main pumping chamber for the heart.  55-70% is normal; my test came back at 60%, quite normal and healthy.   Yay!

The echo took about 30 minutes, but the technician informed me that for subsequent tests (every 3 months) they’ll only need to calculate the EF, which should only take about 15 minutes.  It was pretty painless, except for the view of the aorta from the neck.  (As a refresher, Herceptin can cause loss of heart function, so an echo was done to get a baseline of my heart function.  I’ll have regular tests to monitor my heart function.)

I had a really great phone call with my good friend Mike last night.  He’s a doctor and can relate easily to what I’m saying, from the science to all the other parts of dealing with this situation. He offered from our very first phone call about my cancer that I could call him to talk about anything, including complain about what’s going on.  It was great to talk through things with someone who can be very matter of fact about the situation, but who also knows me pretty well. Thanks, Mike, for letting me bitch to you!  ♥ you!

Tomorrow is the chemo education session, and the next day is my outpatient surgery to have a port installed.  Things are rolling right along, and that’s good.

January 19, 2015

I finally called Dr. Priya’s nurse Friday and explained to her the dilemma:  I need to be at work for the month of July, and if possible, through the first part of August, so can I start chemo a month later, or can Dr. Priya talk to Dr. Ching and make it okay for me to have surgery about 10 weeks after chemo, rather than within 6 weeks?

I don’t have the absolute final word, but I have my first chemo appointment scheduled for Thursday, January 29 at 8:45 am.  While I wanted to have my appointments on Fridays, there wasn’t one available on the 30th.  I’m going to take the 29th off and work from home on the 30th, because I don’t know how I’ll feel.  I read on breastcancer.org how with the start of chemo some women wonder if they’re doing the right thing, because one feels sick when getting chemo, but not before the start of chemo.  It’s true:  people ask me how I’m feeling, and I tell them that I feel fine, normal even.  No matter how crappy I’m going to feel, though, I don’t think I’ll question whether what I’m doing is the right thing.  My family is grounded in science – I’m the only one with a BA rather than a BS in my generation.  One sister is a doctor married to a doctor and the other sister is in biotech.  One niece is a pharmacist, another is in her 3rd year of an MD/PhD program, and the 3rd niece is doing research at Stanford while applying to medical school.  Ted has a BS and taught high school science for a number of years.  I definitely believe in better living through chemistry, and this is the ultimate belief in chemistry and science.

I got my hair cut short on Saturday.  My hair was pretty long; I don’t know how much was cut, exactly, but I assume it was 8-10 inches. I didn’t donate it; I was under the impression that for hair donations it had to be un-color treated.  Apparently that’s no longer the case, but what’s done is done.  I’ve forgotten how convenient short hair is; maybe I’ll keep it short after it grows back.  The stylist (thank you, Joanne) left enough on so that I have a sassy ‘do for the next few weeks.

As hard as it is, or will be, for me to be going through this, I think it’s hardest on the caregivers. They can only learn as much as possible about the disease, watch, and provide support to their loved one.  They have fears:  of their loved one suffering, or longer term, that their loved one may succumb to this disease.  As with many things in life, breast cancer does not affect just the person who has it, but those around her.  I feel badly about that, but there is nothing I can do about it.  I can only be positive, get through this treatment, and keep telling myself and all those around me, “it’ll all be okay.”  I am blessed to have so many who care about me, and who are willing to take their time, effort and resources to help me, even though they may have a thousand other things going on in their own lives.  Thank you to everyone who have already reached out, with a text, PM, email; with flowers, comfort bags, homemade cakes, notepads….you are all amazing and incredible.

January 15, 2015

Things are happening!  And also not happening.

I got a phone call from Dr. Ching (breast surgeon) to confirm that we’re switching the order so that I’m doing chemo first then surgery.  She had two things she wanted to talk to me about that change.  First, sometimes the tumor shrinks so much from chemo that it cannot be found easily.  In order to ensure she can find the tumor site after chemo, she told me that I needed to have a clip, or marker, put in place where the tumor is.  Other women who have had negative biopsies have had this done so that during the annual mammogram, the radiologist can make sure to look at that area.  I had the clip put in this morning. It’s not bleeding as much as when I had the biopsy, and the pain is definitely less, but it’s still a wee awkward to be icing my breast for 10 minutes every hour at work.

The 2nd purpose was to let me know that there are some increased risks in other areas by doing chemo first. “Baseline” refers to doing surgery first, then chemo.

1.  Baseline, 3% of surgeries are unable to “find” the sentinel lymph nodes b/c the radioactive dye does not travel through the milk ducts to the lymph nodes.  Doing chemo first increases the chance to 4%.  If I’m in the 4%, Dr. Ching will remove ALL the lymph nodes on my right side.

2.  Baseline, the % of false positives of taking just the affected lymph nodes is down to 6% (from previous 10%, using the sentinel lymph node technique).  Doing chemo first increases the chance to 12%, so the recommendation is that she will remove all 3 lymph nodes (the first grouping of lymph nodes) during surgery, not just the sentinel lymph node.  (False positive in this case means thinking that surgery removed all the cancerous material when in fact it did not.)

Oh well.  I guess there are plusses and minuses to everything.

The other issue which came up has to do with timing.  When Dr. Priya talked to me about doing chemo first, she said that because the tumor is reduced, I can have surgery whenever I wanted.  She didn’t recommend putting off for a really long time, but certainly I could wait until I completed my commitments (mid-August) to have surgery. Dr. Ching said no, you need to have surgery 4-6 weeks after your last treatment.  I sent a message to Dr. Priya after that phone call which essentially asked if I could delay chemo so that surgery could be in August, or could she convince Dr. Ching that I can have surgery 3 months after my last infusion.  I haven’t heard back, and if I don’t hear soon, I’ll call Dr. Priya’s nurse.
In the meantime, the outpatient surgery to install my port has been scheduled from January 23 at 2 pm.  Sisters have been conscripted to take me and pick me up…now all I need is to know when chemo will start.

January 13, 2015 – Part 2!

I got a phone call at my Conference Room F “meeting” (aka Happy Hour at Fiorello’s) from Dr. Priya’s nurse.  My echo cardiogram has been scheduled for Jan 20 at 11 am, and the chemo education session for Jan 22 at 3 pm.  Turns out that I’m going to have a port put in (I assume my chest) and Dr. Priya wants that to happen by Jan 21!  It’s a short outpatient surgery to put the port in (and take it out) and Dr. Priya wants to give me a few days to recover from that before the first treatment.  I suppose that means I could get my first treatment as early as Jan 23, but I want to try to schedule the treatments so that I can make certain commitments.

In yesterday’s post I failed to mention  that the other advantage of the chemo reducing the size of the tumor and therefore less tissue removed during surgery is that Dr. Ching was concerned about the location of my tumor.  Apparently, it’s very close to the skin, and she wasn’t sure she’d be able to get clear margins on the first pass.  I was really hoping I wouldn’t need two surgeries; I’m hopeful that I definitely won’t need a 2nd surgery now.

I have started receiving all sorts of things.  I find it astounding that people are taking time out of their busy lives to send me something, never mind all the prayers that I know are being said by friends, prayer circles and churches!  My village is large and wide ranging:  it is with all of your good healing thoughts and the light of love that I will get through this.  Thank you, my friends, for believing in me.

 

January 13, 2015

Some of you have asked when chemo will start.  The short answer is as soon as possible.  Dr. Priya needs to have Dr. Ching sign off on not doing the lymph node biopsy prior to starting chemo.  Then paperwork (insurance approvals and the like) need to be secured; I also need to attend a chemo education session with Dr. Priya’s nurse.  I will also need a heart scan.  One of the possible side effects of Herceptin is a loss of heart function, so Dr. Priya wants a baseline scan done before I start chemo.

I guess I’ll get my hair cut soon.  Maybe I should go back to the asymmetric buzz cut with spikes that I had in the late 80’s.  🙂

 

January 12, 2015

My world got rocked today.

My medical oncologist asked for an appointment, which was today.  I thought it was to discuss my HER2+ status more in depth, and I thought it was just to confirm that I’d need to have Herceptin for a year.  Well, the appointment was to discuss my HER2+ status more in depth, that’s for sure!

Dr. Priya would like to start with neoadjuvant therapy, aka start with chemo first. Surgery would then be after chemo, followed by radiation.  In a previous post I’d mentioned that I wanted to know if I was a candidate for Perjeta (pertuzumab)…well apparently I am.  Studies have shown that Perjeta before surgery is highly effective in treating 2 types of HER2+ cancers, and Perjeta has been approved for treatment before surgery. It has not yet been approved for therapy after surgery; while there’s nothing to say it’s not effective post surgery, because it hasn’t yet been approved for this, insurance won’t pay for it.  At $8000 per treatment, it’s not something I can afford out of pocket, so pre-surgery it is!

Having chemo before surgery will reduce the size of the tumor, which, if logic follows, means that during surgery less tissue will have to be removed.  Further logic follows that perhaps I won’t go from a C cup to a B cup, but maybe a C- or B+ instead!  🙂

What I did not realize is that because I’m HER2+, my chemo regimen is not 12 weeks, but 18 weeks.   Now I know some of you will think this crazy, but this change in my treatment plan actually is better for me at work.  We are in the middle of a huge database conversion and we go live on July 15; with this new plan, I will likely be done in June, and have some time to recover while we go live.  Because the tumor will be reduced, there’s not a huge urgency to have surgery, so I can honor my commitment to chair a conference in early August, then have surgery.  If I proceed with surgery on January 28, have a 6 week recovery, then 18 weeks of chemo, I’d not only miss critical times during conversion but perhaps would have to miss the August conference.

The chemo treatment plan is Perjeta plus TCH (as opposed to THC  🙂  ).  Taxotere (docetaxel), Carboplatin (paraplatin) and Herceptin (trastuzumab).  I had also misunderstood the Herceptin regimen:  while the treatment lasts 52 weeks, the infusions are every 3 weeks.  So I start the Herceptin along with the other chemo drugs, and I continue it while I recover from the other chemo, through surgery, through radiation.

There was discussion about whether there should be biopsy of the sentinel lymph node before I start chemo.  Dr. Priya says that current thinking, at least among medical oncologists, is that it’s not necessary; the chemo will reduce anything in the lymph node as well, and the lymph node will be removed during surgery anyway.  In my case, the MRI showed nothing in the lymph node, which Dr. Ching did not mention (or I forgot), so it’s especially true that I won’t need surgery to remove the lymph node before chemo.  I’m pleased to know that nothing showed up in my lymph nodes on the MRI; chances are that my cancer is Stage 1 with this news.  Pure speculation on my part, but considering the factors which decide stage, that’s what I’m going believe.

It’s all good, right?  I mean, no matter what I need 18 weeks of chemo, so I might as well have it first.  So why was my world rocked?  The way I’m able to deal with this whole cancer thing is to break it down into goals or milestones.  I was completely focused on getting through the surgery first, then I’d move onto chemo, and then onto radiation. I’m goal-oriented, and it helped me to think of my treatment plan this way.  Flipping chemo and surgery was just something to which I needed to adjust.  Now that I have, I’m good!

January 5, 2015

Today was the first day back at work since the holidays, and the first chance I had to tell my staff and colleagues about my breast cancer.   I was not afraid to tell them; after all, I’d already decided to be very open about my cancer, and I knew that they would all be supportive.  I felt badly about giving this news to one staff member whose father was just diagnosed with Stage IV pancreatic cancer – I’m sure it feels like cancer is all around for this person.  And I felt equally bad for the person who started crying.  You two know who you are:  for the first, I’m sorry to have added to your emotional burden and for the second, ♥ to you for your sensitivity.

Today was also the day that I posted my status on Facebook – which means I’ve let the genie out of the bottle now!  I’ve always planned to be very public about this:  if my diagnosis and treatment can help even one person be more diligent to do her breast self-exams and get her annual mammograms, then my job is done.  Naturally, I’m extremely touched and humbled by all the outpouring of love, support, prayers and encouragement – you all rock, my friends!

Onto more mundane things.  I have an appointment with Dr. Priya, my medical oncologist on Monday.  For some reason she feels the need to discuss more specific treatment now that we know that I’m HER2 positive.  It’s fine – I have a few questions which have come up since our first consultation, such as:  will I have hair loss for the entire year because of the Herceptin?  Am I candidate for Perjeta?  Will I get a port for the Herceptin?  Is it recommended that folks who visit me get a flu shot?

My pre and post op appointments have been set.  My pre op appointment is on Jan 27, so my last day at work will be Jan 26 for at least a month.  My sister will be able to take me to my post op appointment on Monday, Feb 2.   It takes a village.  It really does.

December 31, 2014

Happy New Year’s Eve!

I had a consult with Dr. Lundahl, the radiation oncologist yesterday, but couldn’t post because we went from the appointment to the Foster Farms San Francisco Bowl game. Despite the chilly temps, Stanford played very well and was victorious, so it was worth braving what for us were freezing temps.

Dr. Lundahl has a dry sense of humor, which I love.  His first words were that no, you won’t be radioactive during treatment.  He must get this question a lot!  He explained that they’d be irradiating the entire breast from 2 directions, that radiation therapy is 1-2 weeks after I finish general chemo (not the targeted therapy of Herceptin), and that the treatment will likely run 5-6 weeks.  Treatment is 5 days a week for those 5-6 weeks, but each treatment is only 30 minutes or so.  Not much new information for me, but it was good to meet him.  He also said that Dr. Ching does a great job of not being overly aggressive in removing breast tissue.  One of the questions I had was since Dr. Ching is concerned about how close the tumor is to my skin and that she may not be able to get clear margins, whether that will have any affect on the treatment plan.  He didn’t think so, but did reiterate that if clear margins aren’t achieved, a second surgery is needed.

While I was tailgating before the bowl game, Dr. Priya called to see how I was doing, and asked that I call her back.  I called her back today, but she’s out until Monday.  I did talk to her nurse, who said that Dr. Priya actually wanted me to come back in to talk to her, probably about the HER2 positive diagnosis and how this will affect the chemo treatment.  The nurse will call me back next week after she’s had a chance to talk with Dr. Priya.

I’m also expecting a call from Dora, Dr. White’s surgery scheduler, to book pre-op appointments.  This is my life now, going from appointment to appointment.

These arrived the other day.  I have awesome friends.

and reminds me of this post I saw on Facebook the other day:  IMG_3092.2014-12-29_174435

I’ve only told a few people about my diagnosis at this point, but everyone has been amazing. Thank you, Julie & Kelsey, for the beautiful flowers.  Love you!

Enjoy your New Year’s celebrations – stay safe!

December 29, 2014

My surgery got scheduled today, and it’s a lot later than I’d hoped – January 28 at noon. I was really hoping for a mid-January date, but we needed to coordinate 2 surgeons’ schedules, since I’m having the lumpectomy and reconstruction while I’m under.  I guess that gives me more time to get things ready, but it will make my work schedule much more difficult.

I had lunch with a friend today who suggested that after I’m done with the 52 week targeted chemotherapy (Herceptin) that I should have a celebration in which everyone has to go sky diving with me.  I think that’s a most excellent idea, so y’all are on notice.  For those of you who don’t know, I went sky diving in September this year and it was the BEST experience I’ve ever had.  Sky diving was on my bucket list, and when I got the opportunity to do it (thanks Sherry and Kelsey), I grabbed the chance.  There was nothing like the sensation of free falling at 110 mph.  I said I’d do it again in a heartbeat and I meant it.  Brent, I’m gonna hold you to your promise to come sky diving with me!

Tomorrow I have a consult with the radiation oncologist.  Radiation seems so far away right now.  Baby steps.

December 26, 2014

We met with Dr. White, the plastic surgeon today.  He explained and drew what the breast lift  involves, and I don’t mind saying, it’s a little wierd.  Thousands of women have this surgery, so I suppose it works, but it’s all very…odd.  In my case this surgery is called a contra-lateral reduction.  There’s a 15% chance that I’ll lose sensation around the nipple, but honestly I won’t care if the cancer is out of me.  Truth be told I’m a little sad that I lose a little breast size – it’s not like I have overly large breasts to begin with, but again, it’ll be worth it if the surgery (and subsequent treatment) takes care of the cancer.

Post-surgery care is under Dr. White’s care, although Dr. Ching has said several times to listen to her about post-surgery instructions – at least for the right side.  I’ll believe her, because I certainly don’t want to get lymphedema.   That just seems like a whole other ball of wax that I’d rather avoid.  If everything goes okay, looks like full recovery will take 5-6 weeks, which is consistent with everything Dr. Ching and Jennifer have said.

On the way back from the appointment my niece Alex reminded me Dr. Priya had mentioned that with some HER2 positive cases are treated with a drug for neo-adjuvent therapy.  This is why you bring others to your appointments; I hadn’t remember that tidbit or the name of the drug, but my niece did.  It’s pertuzamab, common name Perjeta.  We didn’t really discuss it because during the consult we didn’t know whether I was HER2 positive or not.  It was only after we’d left the office and were on our way out that Dr. Priya caught  me and let me know that Pathology had gotten back to her and told her my results.

When I returned home, I called Jennifer to let her know that Dr. White was fine, and that I wanted to go ahead with the “lump and lift.”  I then asked her about the Perjeta, and she informed me that the therapy had been approved for neo-adjuvent therapy when the tumor is 2 cm or greater, and had not yet been approved for therapy post-surgery.  There is no belief that Perjeta won’t also be effective post-surgery, but approval has not occurred yet.  Jennifer is going to send a message to Dr. Priya just to check, but at the time we’d discussed it Dr. Priya didn’t have all the information we now have.  My cancer is HER2 positive, but the MRI also “downgraded” the size from 1.93 cm to 1.7 cm.  I’m not sure I’d mentioned that previously.

Dr. White’s surgery scheduler was not at work today, so I suspect my surgery won’t be scheduled until Monday.  I really hope it will be no later than the 3rd week of January at this point.  Dr. White gave us his cell and home numbers, which I thought was great.  Was he wondering why I wasn’t asking more questions?  Worried that he hadn’t given enough information?  Or does he do that with all of his patients?

What’s up next?  A consult with the radiation oncologist on Tuesday.  It really is a team of people, a ton of  moving parts and so much information being thrown at  me.  I’m glad I’m off work right now, just so I have the time and space to process it all.