January 30, 2015

A mellow day.  I felt mostly okay, so I did some work and relaxed.  I had my Neulasta shot around 4:30.  The nurse suggested having it in my abdomen, and aside from a little discomfort when the drug first went in, it was fine.  It was only 6 mls, but it was very slowly injected.  I was asked to stay around for 20 minutes because it was the first time I’ve had the shot.  Everything was fine so I left.  On the way home, and continuing now, I feel occasional slight twinges of pain – like in my hip after too much salsa dancing. The injection nurse mentioned Claritin, so I’m glad I started it.

I got a notice that there was a change to my online health account.  I checked, and the bill for yesterday’s infusion was a whopping $49,779!  The Perjeta alone was $26K+, so Dr. Priya massively underestimated the cost.

Perhaps it’s all the dairy I’ve had, but the Taxotere is not making me constipated at all! I’m having the exact opposite reaction, in fact.  I don’t know what’s worse. I also haven’t consumed the 3 quarts of liquid, so I’d better get going because of diarrhea. The last thing I need is to get dehydrated.

All in all, not a bad day.  I’m okay with that.

January 29, 2015

First Chemo Treatment!

It was a long day, a lot longer than I thought.  We got there on time for an 8:45 appointment.  Things got going with the puncture of the port – which is through the skin, obviously.  Some infusion centers spray a little novocaine or lidocaine to numb the port area, but not at PAMF.  The puncture was actually pretty bad, and while I adjusted to it, I was surprised at how much it hurt.  I’m no wimp, and I’ve been poked and punctured a lot – donating blood, blood tests, IVs for 5 major surgeries and sedation procedures – but this hurt.  I’ve now got a numbing cream, EMLA, ($45 later) to put on about 30 minutes before my next port puncture.

The first thing to go in was saline to flush the port.  That was for about 10 minutes, and then the pre-meds – no, not undergraduate students, but Decadron (steroid) and Zofran (anti-nausea) which took about 20 minutes.  So my first drug, Perjeta, didn’t get started until about 9:45.  That infusion took 60 minutes, which went just fine.  There was a 30 minute break, and then the second drug Herceptin, got started.  This first time, Herceptin was a 90 minute infusion.  The next chemo treatment the Herceptin will be 60 minutes, and then 30 minutes after that each time – which is good because that’s the targeted chemo drug that I will need to have for 52 weeks.

Each infusion is given mixed with a saline solution; that with all the liquid I’m supposed to drink meant that I went to bathroom a lot!  and I really should have taken a potty break between the Herceptin and the Taxotere!  Taxotere is the drug that the nurses watch very carefully while it’s being administered.  It was started right away, first with a saline flush, then a slow drip of 50 mls over 30 minutes, then increased to 100 mls for 30 minutes, then the last 220 mls or so over 45 minutes.  I was told to hold a cup of ice for possible neuropathy and asked if I wanted to put my feet in a cold bath to help with possible neuropathy, and then asked to eat ice chips.  The nurses asked if I was getting itchy or a rash, and whether I had any back pain repeatedly.  I had none of those symptoms, but by the end my face was flushed, as if I’d had a drink.  So they took my vitals, and decided to give me a saline flush for 30 minutes, then retake my vitals.  My vitals after the flush were more back to what they’d been all day (although the vitals right after the Taxotere weren’t terrible).  So it was decided that my face was flushed more likely from the steroid than the Taxotere.

After a quick break, the final drug of the day was given, Carboplatin.  Only a 30 minute infusion, it seemed to finish in no time flat.  Then it was about 30 mls of saline flush for the port, then Heparin in the port to prevent clotting, the needle removed, and I was pretty much good to go – at 4:45!  8 hours in the infusion center.  Wow.

Well, I was sort of good to go. I had to make an appointment to get a Neulasta shot for tomorrow. Neulasta stimulates the bone marrow, and can cause extreme bone pain. Fortunately, my friend Lori pointed me to recent research about taking Claritin with Neulasta, so I’m going to be proactive and take Claritin.  I’d rather avoid bone pain, thank you very much.

I also had to make appointments for my next chemo treatment, which isn’t as easy as you might think.  I have to have a blood draw at least 2 hours before a doctor’s appointment, because I’m choosing to have the blood draw through my port (although if EMLA doesn’t work, I may choose to having a regular blood draw) and generally the doctor’s appointment is the day before chemo.  And because it was suggested that Neulasta be given by the injection specialist in the infusion center, I’m going to have chemo on Thursdays, rather than Fridays, if I can.  Otherwise I have to receive the Neulasta shot at Urgent Care, and most likely not by an injection expert.  Neulasta is pretty thick and is best given in a really fleshy part of the body (my arms are way fleshy, so I think I’ll spare my butt).  So I’ll have doctor’s appointment on Wednesdays, chemo infusion on Thursday, and work from home on Friday with time for a Neulasta shot.  I was able to do some work today, and some knitting, but my sister and I talked a bunch, which was great.  Thank you notes and other work will have to wait until tomorrow.

The only thing that was disappointing today was I learned that Dr. Priya is on medical leave from February 9 until April 13, which means I won’t see her until right before my 5th treatment!  I’m so sad.  I just hope Dr. Kushlan is just as good.

I finally wrote out all the drugs and supplements I need to take from Day 0 through Day 7, because they all have times to be taken and different dosages.  I could probably keep it all straight in my mind, but it helped to write it all out.

I have so much support from all over, but I have to give kudos to my sisters for today. Lucy picked me up this morning and Chris met us at Oncology.  Lucy stayed for about an hour and then had to go, but Chris stayed until about 3:15.  Lucy came back around 3:30 until the end, and then took me to run errands and home.  It was great to have my sisters there for this first session.  I would have been fine, but it was awesome to have them there.  And of course, Ted was home with dinner and just made me cherry-mango popsicles, so the awesomeness continues.

Pretty long day, and I feel as if I should head to bed, but right now I’ve got Loa purring on my lap and the Sharks are beating the crap out of the Ducks, so life is good!

January 27, 2015

I spent the weekend gathering all my chemo supplies, both OTC and prescription…and dealing with an itching which was driving me mad.  The area around the port was so itchy that I woke up one night from it.  I took Benedryl, which helped a little, but eventually what helped the most was a 4% lidocaine gel.  That, and time, I suspect.  The concern was that I was allergic to the silicone material of the port, but I never ran a fever and the port itself was not inflamed.  So the itching was probably my body adjusting to the port, or I was allergic the antiseptic wash, or some such.

My prescriptions (4 of them) cost $100.  That’s only the beginning of my expenses.  I find it somewhat unfair that I have to pay $800 for the echocardiogram, and $1700 towards the procedure to put in the clip.  Unfortunately, I have the high deductible PPO with HSA – I switched to this type of coverage last year, thinking that I could build up the HSA until it was really needed.  Well, so much for that idea.  And of course, since we’re in a new calendar year,  all my deductibles reset.

The OTC supplies?  Such glorious items such as Imodium, stool softener, Tums, Milk of Magnesia, senna…and I’ve ordered Tea Tree oil, nail repair, hand cream, mints, lemon drops.  My medicine cabinet is quickly filling up.

I can’t have any dental work while I’m having chemo, so I rescheduled my March cleaning to today.  My dentist and her hygienist recommended a prescription toothpaste and a mouth rinse (Biotene) to help with mouth sores.  So I bought the Biotene, along with Natural Dentist, recommended by a friend.  I’ll pick up the special toothpaste tomorrow.

One of the other things I ordered was Claritin.  I first heard about Claritin helping with bone pain from the Neulasta shot from another friend, and I did a little research.  While the nurse did not mention it, I’m going to switch out the Allegra I usually take for seasonal allergies to Claritin for a week or so.

I will admit to being a little freaked out after reading the 1.5″ binder full of information from Oncology.  Seeing in black and white all the potential side effects is a little daunting.  All I can do, though, is to watch for the signs and manage as much as possible.  Listen to my body, and don’t push too hard.  Yeah, right.  🙂

January 24, 2015

It’s real.

Not that I ever thought my cancer wasn’t real, but having a port in your chest makes it physically real.  Maybe it’s the fact that it’s uncomfortable and actually hurts a bit that makes it more real.

A port (mine is a mediport) is an implantable device, placed under the skin used to give therapy or withdraw blood.  It’s a small reservoir with a rubber septum that can be repeatedly punctured with a special type of needle.  There’s a catheter (tube) which runs from the reservoir into the superior vena cava, a nice big, short vein that will spread the chemo drugs quickly

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The port, while a little bigger than a quarter in diameter, sticks up from my chest a lot more than I would have thought.  Right now it hurts, and itches like the devil.  Tylenol is my friend.  I’m hoping the pain will go away as my body adjusts to it; experience tells me it will.

The procedure to put the port in was quick and easy.  It took more time to get me all prepped than to do the actual install.  It was also done under conscious sedation, similar to that of a colonoscopy.  I fell asleep, but there was none of the grogginess or nausea which accompanies anesthesia, and for that I’m grateful.  I was talking to all of the nurses during most of the procedure, but once they put the drape over my face to sterilize the install area, I just closed my eyes and slept.  I never even laid eyes on the doctor who actually performed the procedure.

I had a long conversation with Dr. Priya on Thursday morning which I forgot to mention.  I want to make sure that my doctors are in sync with delaying surgery until mid-August.  I hadn’t actually heard if Dr. Priya had talked with Dr. Ching, so I called Jennifer, the nurse educator, to find out what she could.  (BTW, it’s really great to have someone I can call for things like this – someone who can  help navigate the system for me.  PAMF is pretty great.)

Long story short, Dr. Priya said that Dr. Ching is a by-the-book doctor, and yes, current protocol is that my surgery should occur no later than six weeks after the end of my chemo treatment.  However, Dr. Priya pointed out that something could happen during chemo treatment – I don’t tolerate the drugs well and we have to change them, the treatments could take longer, etc – any number of things which could extend the end of my chemo treatment.  If by chance my chemo treatment ends on time at the end of May, then Dr. Priya said that I am still the one who can decide what should be done. She offered to delay the start of chemo by a week, but was uncomfortable delaying it by a month, because the cancer is still actively growing.  I declined – I’m mentally ready to get going, and I’ve got everything set at work and with my sisters for rides and company.  Let’s rock and roll, I say!

January 22, 2015

I had my chemo education session with Dr. Priya’s nurse, Velia.  Perhaps the best way to describe the session is that I walked away with a 1.5″ binder full of information and orders to get a blood test.  Actually, most of the information covered I already knew, but there was plenty of new information.

Such as having a Chemo Kit of OTC items:  thermometer, Tylenol, Ducosate, Senna, Milk of Magnesia, Miralax, Imodium, baking soda mouthwash, and Tums/Maalox.  Such as having to take Decadron, a steroid,  the day before an infusion and for 2 days afterwards to help counteract nausea and help stimulate appetite. Such as watching my blood sugar because the Decadron can complicate my Type 2 diabetes. Such as needing to have a shot of Neulasta the day after an infusion to help boost my white  blood cell counts. Such as needing a blood test within 24 hours before every infusion, other than the first one next week. Such as having an appointment with Dr. Priya before every infusion. 

It seems that chemo will be a balancing act between nausea and eating enough, between constipation and diarrhea, between blood sugar and white blood counts.  My body is a battlefield.  I think I need to listen to some Pat Benatar.

In just a few hours, I’ll leave for the hospital to have my Mediport installed.  I’ll have it for a year, courtesy of the Herceptin.  My lovely HER2+ cancer just keeps on giving.  It’ll be better for me in the end, because the veins in my left arm are super deep and very hard to get to, and the ones on my right arm are highly scarred from years of giving blood (I used to donate platelets) and blood tests.  A port makes it more convenient to receive the infusions – I’ll have full use of both my arms.

The best news was that I can bring my laptop to my infusions!  There’s free wireless in the infusion center, and outlets near every chair.  I can do up to the minute updates on this blog!  Well, maybe not.  🙂

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.  🙂