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Quick! Hand me the Rogaine! – February 13, 2015

I started losing my hair today.

You know that some days it seems there’s more hair on your brush than usual?  I thought maybe that’s what it was, or that because I hadn’t taken a shower in a few days, that’s why there was more hair than normal.  And then it just wouldn’t stop.  I mean, it did, but when I got out of the shower, there was quite a pile on the drain.  You know in movies how the hair comes out?  That’s what it felt like, but it wasn’t that much in each clump.  It just felt like there was, and now, I can’t run my hands through my hair without coming away with quite a few strands.  So I guess that means I’ll be getting a buzz, and then shaving my head soon.  I knew it would happen, I just wish it wouldn’t have happened this weekend.  Not only is it Valentine’s Day weekend, but Ted and I are in Sonoma with our best friends the Rosaleses and their girls for a fun weekend.

As for me otherwise, Dr. K gave me the go ahead to progress to the BRAT diet (Bananas, (white) Rice, Applesauce, (white) Toast), for which I’m grateful.  I was definitely feeling more hungry and certainly tired of liquids only.  A bit of a bummer this happened while we are here in Sonoma wine country; I’ll be surrounded by some of the best food and wine in the country, but that’s okay.  It’s the company that’s important.  Dr. K also told me that if I do okay with the BRAT diet (i.e., the diarrhea stops), then I can slowly add in other things like chicken, fish, eggs – no high fiber until the diarrhea is gone for a few days.  So tonight on our drive up we stopped at Panera and I had 1/2 a loaf (yes, 1/2 loaf!) of bread dipped in chicken broth.  It was delicious, it stayed down, and thus far my intestines have not reacted adversely.  Here’s to hoping that I’m finally on the upswing from these terrible 2 weeks.

My friend Angie got her first mammogram today, and I’d like to think it’s mainly because of me.  She turned 40 in the last year, and I nagged her to go until she made an appointment.  I think many women are afraid to go because they think it will hurt, or just fear of the unknown.  Angie’s appointment was for 7:30 am and by 8:05 am she sent me a private message on Facebook asking what the big deal was about mammos. Lesson in this?  If you’re 40 or older, GET A MAMMOGRAM and get one every year.  I’m the poster child for annual mammograms – my cancer grew in just one year.  To coin the Nike phrase, JUST DO IT.

I could never be a drug addict. – February 11, 2015

I’ve had a frustrating week, but there is light at the end of the tunnel.

My last post was hopeful that I was able to manage the vomiting and that the opium was helping with the diarrhea.  That’s not quite what happened.  I’ll spare every detail, but basically the nurses had me tinker with how often I was taking the opium, and how often I could be taking the Zofran and compazine to manage the vomiting.  The vomiting actually got worse:  on Monday I had only plain white rice for lunch and that did not stay down; on Tuesday I had only jello and that would not stay down.  I was taking 4 doses of the opium during waking hours, so every 4 hours, and the vomiting was getting progressively worse.

When Velia called me yesterday, asking me to come in to see Dr. Kushlan today and to possibly receive IV fluids, I asked her whether it’s possible the opium was causing the vomiting.  She paused, then said, “Oh, yes, it could be…it’s a narcotic.”  She had the grace to sound a bit sheepish, told me she’d contact me with a time to go in to see Dr. Kushlan, and hung up kind of quickly.  I happen to know that I do not well with narcotics.  My first knee surgery was over 3 hours long, and I was given heavy duty narcotics during the procedure; during recovery the staff was so concerned that I would not stop vomiting that I ended up getting a shot of compazine. Every surgery I’ve had since (I’ve had 4 others), I warn the anesthesiologist that I am prone to vomiting.

I took 2 more doses of the opium after I talked with Velia, both times with Zofran and ate a few pretzels also.  I had only one more vomiting episode last night, but this morning I decided to take matters into my own hands and not take the opium (I almost didn’t take the last dose, but Ted had already measured it out and with what it costs, I couldn’t waste it).  I did take a Zofran, just in case I got nauseous, but that’s it.  This morning I had 2 episodes of diarrhea, and they weren’t bad at all; I ate some jello and that stayed down.

I sent a rather strongly worded email to the healthcare team last night, telling them that I thought the vomiting was caused by the opium, and was there something else they could give me for the diarrhea other than opium?  My father-in-law had emailed me telling me of a drug he’d been prescribed to help with diarrhea, so I mentioned that drug as an example.  I also told them about my surgical experiences with narcotics…and at the end I told them I was feeling crappy and was unhappy.

This morning, I got a call from Oncology, saying that I should just come in and Dr. Kushlan would fit me in when she could.  Of course, showering and getting dressed is very tiring for me right now, because I’ve essentially had nothing to eat for about 4 days.  So it took me a couple of hours before I was on the road.

Dr. Kushlan is very nice (yes, Lucy the 2nd, you picked a good one).  She’d been described to me by one of the nurses as “old school” but in this case it might play in my favor.  Her first concern is to get everything back under control enough so that I’m well enough for next week’s (!) treatment.  She agreed with me that the opium probably caused my increased vomiting.  She also said that by now, the chemo drugs should have run their course, and so she told me not to take anything unless needed, such as Zofran or compazine if I have nausea, and Lomotil for diarrhea.  I’m on a liquid diet for today, and she told me to call her tomorrow.  If I do okay with the liquid diet, then she’ll slowly add in other food.  She is also likely to leave the Perjeta out of the chemo cocktail next time, to see how I do, and if I do okay, then she’ll add in a lower dose of the Perjeta for the 3rd treatment.  I would have received a lower dose of Perjeta next week anyway, because I also found out this week that in the first treatment, they front-loaded the Perjeta, and that it would be decreased next time.  Now it looks like I’ll be skipping the Perjeta next week.

Dr. Kushlan said that I actually looked better than she thought I would, and that I didn’t look dehydrated.  It’s hard to drink 96 oz of fluids a day, which is what they recommend during treatment, and even harder when you vomit most of it every 3-4 hours.  I’m trying, though, and desperately want to resolve this whole situation.  Ted and I had planned a getaway weekend to Sonoma months ago with Kim and Mark, and I think the outing would be especially welcome now.  I may not be able to take advantage of all the fabulous food and wine that Sonoma offers, but the company and change of locale, especially after these past weeks, will be so appreciated.  Keep your fingers crossed that I have a better day and night.

Days Like These – February 8, 2015

I’m a normally positive person.  I try to see the good rather than the bad.  Being positive, I’m sure, will help me get through this next year.  Let me tell you, though, that yesterday was not one of those days.

Let’s start with Friday.  My diarrhea did not resolve with the increased dosage of Lomotil that Margaret and I agreed upon, so I sent her a message at 5:30 am letting her know.  I’m sure there was discussion behind the scenes, and eventually Margaret called to let me know they were moving to the next step and prescribing me Opium Tincture. Yep, opium.  My intestines need to be high, I guess, so they’ll stop working so much.  It’s a controlled substance, the kind of drug which needs to be typed out, filled out in triplicate, and cannot be called into a pharmacy.  Typically this type of drug can also only be picked up by the patient, but Oncology must have cleared it with the PAMF pharmacy to let my sister pick it up.  While there, the pharmacist took Chris aside and said, “you know, your sister’s co-pay is $560….”  My pharmacy benefit of my insurance makes me pay for the first $1000 of the year’s prescriptions, and since it’s early in the year, the copay was a whopping $560!

My sister was kind enough to bring the opium tincture to me, and after 2 doses, the diarrhea was better.  Not completely resolved, but better.  We got up on the early side yesterday because we had 3 scheduled appointments to visit memory care facilities for my mom, who is in the later stages of Alzheimer’s.  I managed to throw up 4 times during that stretch, and the minute I got home, the diarrhea was back to what it was.  I was frustrated, tired and felt crappy.  Did I trade one side effect for another??  Will I have diarrhea and/or vomiting for 18 weeks?

I checked with my sister (the doctor) and she said it would be fine to take both Zofran and Compazine, just at alternate times.  So I started that, and made sure I took the opium tincture at regular intervals.  I had a much better night: managed to keep down some rice, then some soup.   I had a great night’s sleep (which has never been my problem), and woke up with energy and feeling pretty okay.  I still have some diarrhea, but no vomiting, which is great.  I also just woke up from a 4 hour nap, so obviously my energy is limited, but I’ll take it.

This weekend one of the animal transport organizations for which I volunteer made it a Warrior Weekend.  The volunteer drivers dressed in pink, the kitties are decked out in pink and all sorts of posts are pink.  I am so honored to have so many thinking of me, cheering me on as kitties make their way to furever homes.  Rock the pink!

“You like to be unusual, but this seems to be taking it to extremes” – February 5, 2015

First off, a big happy birthday to my hubby!  I’m sure this is not the way he wanted to spend his birthday, but he remains the sweetest man around.  I sent him off to the Stanford-UCLA basketball game, which apparently is no birthday present at all.

I’m having an unusual reaction to the Perjeta.  I talked to the “diarrhea” nurse for a while today.  We have a plan of attack for the next round of treatment, which is good.  Of primary concern for me now, though, is how to resolve the current situation, which is pretty much non-stop diarrhea.  Margaret gave me some things to do, and then said that if the diarrhea doesn’t stop tomorrow that there were other drugs they could prescribe.  They’d like the situation to resolve before the weekend, and believe me, so do I.

I also talked to her about the nausea.  She basically said that I can take Compazine for as long as I need to, and to take it so that I don’t vomit.  So I’m going to take it every 6 hours.  I didn’t know if I should/could continue to take it, especially if I didn’t feel nauseous all the time, but we’d rather avoid vomiting.

Over the past few days my mouth has changed some.  My tongue is numb in places, and I’ve noticed some sore spots in my mouth.  I think I’ll start using the mouth rinse that my dentist recommended tonight.

I’ve come up with another way for my friends to help celebrate the end of this journey. Of course I’d love for everyone to go skydiving, but recognize that’s not for everyone. This idea also allows for folks everywhere to pitch in.  Hopefully I will be recovered enough to participate in the Avon 39: The Walk to End Breast Cancer.  It happens the 2nd weekend of July every year in 8 cities, so if you’re near one of the cities, participate in the walk; if you’re not, then help by sponsoring someone.  So mark your calendars for 2016!

*The quote above is from my friend and colleague Julie, for whom my absence this week from work has hit the hardest.  Thank you, Julie, for everything you do every day, but especially this week.  I hope to be back next week at full strength.

February 3, 2015

I’ve had a couple not so great days.  Saturday was actually fine…we went to the Stanford women’s basketball game and the Sharks game.  In between we ran a few errands and had dinner at one of my new favorite joints, The Habit Burger.  Everything was fine…until Sunday afternoon.  I was enjoying the Super Bowl when one of the effects of Perjeta hit me full force.  Here I was all prepared for constipation from Taxotere, when I got the opposite.  I got a hold of Velia the nurse right at 8:30 am, and she called in a prescription for Lomotil.  Ted brought it to me around noon, and around midnight things finally got better.  In the meantime I had a bout of nausea, felt like I was running a fever (I wasn’t) and just all round felt like crap.

I was able to sleep for a 4 hour stretch last night, which is good because I needed sleep. When I woke up in the morning, I felt like I was going to pass out – no doubt from the lack of food and drink from the day before.  Thank goodness for Gatorade G2…and a few more hours of sleep.  I’ve eaten more today, and generally feel better.  Definitely not 100%, but better.  I still feel like I’ve got a fever (I still don’t), and just feel odd, kind of off.  I guess now I know what to expect on Day 4 – and to take Lomotil as soon as possible.  In the meantime I hope I continue to feel better.

Lassen has been my bed buddy – I think he likes the electric blanket.  Kea has been the cutest – traipsing into the bathroom with me every time, with a concerned look on his face, jumping onto my lap.  He didn’t get much sleep either, poor kitty.  Let’s hope things are better soon.

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.  🙂