Chemo #2 – February 19, 2015

Today was Round #2 of chemo treatment.  It was only 4.5 hours long (as compared to over 8 hours last time); in addition to not receiving Perjeta today, the Herceptin was dialed back, from 90 minutes to 30 minutes.  Taxotere and Carboplatin were given at the same amounts.  I had mild neuropathy in my left hand while receiving Taxotere, but I had flushed less.  The neuropathy is gone, as are the flushed cheeks.

I had a blood draw at the end of my infusions to check on my potassium levels, and they’re already back to normal.  Dr. K reduced my dose from 40 mg to 20 mg, but wants me to take it for a week.  At least I have pills now, but I’ll finish the terrible liquid form first.

I’m feeling very good, normal even.  I haven’t had diarrhea since 1 pm yesterday, and while I haven’t had a BM either, at least I feel more like myself.  Things could change, obviously, but I’m confident that I’ll sail through this treatment.  I’m taking a vacation day tomorrow (assuming I feel okay) to go with my friend Nancy to Stitches West, the knitting convention. Then my sister Chris has a birthday dinner.  My weekend is packed full, so I have to believe that all will be well.  I’m meeting my friend Chris for breakfast on Saturday (he’s in from Seattle); we have a Stanford Men’s Basketball game at 3:30 and then the Sharks vs. Kings Stadium Series game at Levi’s Stadium at  7 pm.  On Sunday, we have a Stanford Women’s Basketball game at 1 pm, then I head off to work to meet the BlackBaud consultants at 3 pm, followed by a dinner.  Next week we have a intensive user acceptance testing for our new database, so we’ll be busy.  Hopefully all will be well!

Wow, that was awful. – February 17, 2015

I actually went to work today, which felt great.  I’ve missed seeing all my colleagues and while I barely had a minute to relax, it was wonderful.  Working while going through this was what I’ve wanted all along, so I was so happy to go to work.

My day was compressed because I had to leave early to get a blood draw.  I chose to have the blood draw through my port, which meant only a nurse who’s been trained on using the port can do the blood draw, not just any phlebotomist.  The blood draw went fine, and while I was there I finally met Margaret, the diarrhea nurse, and she got Velia too.  They both apologized again for all that I went through, and that they should have brought in Dr. K sooner.  I appreciate the apology, I just wish it hadn’t happened.

I got a call around 6 pm from the on call oncologist, who said the lab called him to alert him to a very low potassium level in my results.  He called in a prescription for potassium, and when I went to pick it up, the pharmacist warned me that it could cause me to gag while drinking it. Apparently the doctor called in a prescription for the liquid form of potassium, even though there’s a pill form available.  Let me tell you, the pharmacist was not wrong (my niece the pharmacist would chime in that of course the pharmacist was right).  That potassium is the nastiest, vilest stuff I’ve ever had.  Nastier than the opium, and nastier than the drink to prepare one for a colonoscopy.  I’d take either of those over that potassium and how lovely, I have 3 more days of it.  Ick ack pitooey!

Tomorrow I have an appointment with Dr. K.  Hopefully despite my low potassium and some other low values I can still have my chemo treatment on Thursday.   Wish me luck!

Hallelujah! And Bzzzzzzzzzzzzzzzz! – February 16, 2015

The diarrhea has finally stopped!  Well, for a little while, at least.  I was so happy about this result that I went off the BRAT diet for lunch, and I paid for it a few hours later.  So it’s back to mostly a BRAT diet for now.

We had a great long weekend away at the Sonoma coast.  The weather was spectacular and it was wonderful to get away for a few days.  The Mountain Boys (our cats) missed us and greeted us warmly.  After unloading and taking a nap, Ted gave me a buzz!  He was tentative at first, but at some point he said it was kind of fun.  I think he did an awesome job!  You can’t see many bald spots, so for now I’m just going to keep it as a buzz.  Perhaps we’ll shave it this weekend.  I feel like GI Jane – it feels super cool!

Tomorrow I have to get a blood draw to see how my blood counts are doing. Wednesday I have an appointment with Dr. K to discuss the results and I assume confirm the treatment for Thursday’s chemo session.  I’ll ask her at that time if my treatments will be extended since I’ll have missed a dose of the Perjeta.

I came home to find that a FB friend had crocheted me a cloche and I love it!  Words can’t express,  though, how supported I feel from everyone.  It’s amazing and wonderful!

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Hair, Hair Everywhere – February 14, 2015

Sometimes I’m not a patient person.  Today was one of those days.  I grew more and more annoyed with finding my hair everywhere as strands kept falling out.  I got impatient with all that hair everywhere, so much so that I decided that I wanted to get my head buzzed at the very least, if not shaved.  Easier said than done here in Guerneville!  One salon was inexplicably closed, another was fully booked, and one wouldn’t answer the phone, so I had no idea what its status was.  So I decided for a buzz it probably was better (and cheaper) to go to a barber shop instead.  The only barbershop in town?  Closed for business.

My solution?  Just cut all my hair and then I shave it.  Kim was brave enough to cut the hair – as short as one can with scissors.  Mark then got it even shorter, and we were ready to shave my head, but I decided to think about it.  By the time I did, it was too late – we had to get ready for dinner.  So I have a buzz of sorts.  At this point I’ll wait until we get home, where we have a buzz kit.  Ted can give me a buzz and we can decide whether to shave or not, but if I decide to go bald it will be easier to shave with a close buzz.

Now that my hair is semi-buzzed, you can clearly see bald spots already.  That was fast!

As for my intestines, it’s status quo.  I’m not having only the BRAT diet but staying close to it; for lunch I had some pasta plain and bread that I dipped into chicken broth.  The diarrhea hasn’t stopped, but has definitely slowed way down, and I’m okay with that.

It’s a beautiful weekend up here – 70 degrees, sunny and just all around amazing.  We’re having a good time!

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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!