Back from Vacation, Back to Work – October 9, 2015

The past month has flown by!  My last entry was about a week before we left for 10 glorious days on Maui.  I was seen 3 times in that week about my scars; they were no longer infected, but they were very slow to heal.  In the end, I was given some tegaderm film bandages- basically really stretchy, sticky saran wrap-like bandages – to put over the parts of the scars which hadn’t healed yet.  I could keep them on all the time, if I chose, but I only used the tegaderm when I was going into the ocean.  One of the surgeons whom I saw in that week warned me to be careful of swimsuit straps.  I have little to no feeling around the scars, and indeed, by the end of the vacation, I’d reopened a little part of my scar from wearing a bikini top too long.

Other than the minor inconvenience of making sure my scars were clean and using the tegaderm, vacation was lovely.  The weather was perfect and our condo was literally on the beach.  I didn’t have a ton of stamina, but how much stamina is needed to sit on a beach?  🙂

A few days after our return to the mainland I had an appointment with my radiation oncologist and for the “simulation.”  During the simulation, a mold is made to help me achieve the same position every time I receive radiation.  Measurements were taken and recorded; the whole process took about an hour.  I got 2 tattoos, or radiation markers.  I told the radiologist that I’d always wanted to get a tattoo, so now I could cross that off my bucket list.  I got a chuckle out of him.

I start radiation therapy on October 12.  It’ll be every weekday for at least 6 weeks, so if it’s 3 pm, you’ll find me at radiation therapy.  The nurse told me that the first hour or two right after receiving treatment is when most patients report feeling tired, so I decided to get radiation later in the day and then I’ll just go home afterwards.  She also told me that because I tan, I may not feel the burn that fair skinned people feel.  I hope that’s the case.  Currently I’m scheduled for treatment until the Friday before Thanksgiving, which is 30 treatments; my understanding was that typical treatments are 33-36 treatments, so I’ll have to ask on Monday whether I need more treatments scheduled.  I hope this means that I’ll be done by the beginning of December at the latest; I still hope I can host Christmas for my family this year, but we’ll have to see how fatigued I am.

This week has been a reality check – returning to work full time after 7 weeks off.  It’s not just being at work, but the commute on top of that which has put a strain on whatever energy I have.  I really need to go to bed much earlier than my usual bedtime because I simply need more sleep.

I had an appointment with my oncologist yesterday.  I asked her about some general soreness I have in my knees, and she said that it could take up to a year before I feel better.  In the meantime she suggested that I walk more.

My magnesium was still low, and I still get diarrhea.  She is also concerned because my calcium is increasing. The diarrhea is not all the time, as before, but at least a few times a week.  About an hour after I left, I got a call from Dr. P’s nurse, telling me that Dr. P put in an urgent referral to the Gastroenterology (GI) department.  When I asked why, Velia said that Dr. P is concerned about my diarrhea.  I managed to get an appointment for today, before chemo.

After much discussion, Dr. S said that there was one thing he could test.  I’ve had diarrhea since the start of chemo (late January), and since I started, I’ve been on 4 rounds of antibiotics.  (port infection, tooth infection, 2 rounds post-surgery).  He said it’s possible that while I was on all those antibiotics and because I’ve been hanging around medical facilities that while the good bacteria was wiped out some bad bacteria got in, albeit at a low level.  My diarrhea isn’t every day now, and it’s not bloody, and I don’t have some of the other symptoms one might expect with a more serious case.  But worth checking out regardless.  Now I get the joy of getting a stool sample.  Ugh.

He’s also puzzled by the low magnesium.  He said he was going to consult some other folks because he couldn’t fathom a reason and it just bothers him that we don’t have a cause.  But other than that he didn’t feel an endoscopy was necessary, and since I wasn’t really complaining, we’d forgo that procedure for now.

I got a jury summons for November 4.  I am more than happy to do my civic duty, but I simply can’t while undergoing radiation therapy and chemo.  I can ask for a continuance for no stated reason for 6 months, but that would only be good until May.  I’ll still be undergoing chemo through May, so I asked Dr. P to write me a note to excuse me from jury duty for medical reasons.  She wrote it to give me a year off. Hopefully the county will accept that.

I’m here in the infusion center, getting magnesium and Herceptin.  Just another Friday in my life this year.

Twas the Night Before Surgery – August 11, 2015

Just a quick post.  Everything starts tomorrow at 8 am.  I have to go to the Breast Center for a wire localization procedure, and then at 9 am to Nuclear Medicine, where a dye will be injected.  The dye is to help identify lymph nodes. Then I report at 10 am to the SurgeCenter; my surgery is scheduled for 11 am.

The surgery is scheduled for 3.5 hours, and then I’ll be sent home.  I’ve picked up antibiotics and pain meds (percocet, my drug of choice!), and had some blood work and an EKG.  A small moment of panic when I received a call from Dr. Ching’s office informing me that my EKG was abnormal and my primary care physician needed to okay the surgery given the abnormal EKG.  My PCP did authorize the surgery, explaining that the result wasn’t so much abnormal as it was different from the last one I’d had.  Whew!

I will remain in the dressing that I’m sent home with for a week, when I have my first post-op with Dr. White’s (plastic surgeon) office.  Hopefully by then the drains can be removed (i.e., I’m draining very little) and I can finally take a shower.  My first post-op with Dr. Ching is the following Monday, when I will hopefully get the release to be able to drive.  I have chemo that Friday, so it would be great to be able to drive myself rather than bother family and friends to be my chauffeur.

Someone at work set up a MealTrain for Ted and me.  It’s a way to ask folks to provide meals for us – very cool!  Folks can drop off home cooked meals, or provide gift certificates for DoorDash, Munchery or the like.  This will relieve Ted from having to cook AND take care of me for the next couple of weeks.

Wish me luck!  While I’ve had 5 prior surgeries, those have all been orthopedic in nature – this one will be very different.  I understand that hardest thing to adjust to is nerves firing, not necessarily soreness as from surgeries which cut into muscle. I’ll find out soon enough!

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.  🙂