breast cancer

#3 Down! – April 17, 2015

I had my 3rd infusion of the new protocol today, and as with the other two, it went just fine. I was done with the premeds and chemo in three hours, but then had another three hours for more magnesium.  My magnesium was better, but still low.

Before the infusion, though, I had an appointment with Dr. Priya.  It was so good to see her again.  She told me that everyone loves me, or at least my attitude.  She said that where the clinic is located…well, patients tend to complain about everything, even when they don’t have anything to complain about.  Me, on the other hand, had every right to complain about everything and never did.  She asked me how I did it!  That was nice to hear.

I asked Dr. Priya about the length of the second part of the protocol (Taxol, Herceptin and Perjeta).  The reason I’m concerned about when I finish chemo is that affects when I can have my surgery.  And the reason I want to have my surgery as close to the week of August 10 as possible is that I’ve scheduled some recovery time in Maui.  Someone was kind enough to give me time at a condo, and someone else upgraded me to first class.  (Yes, I’m extremely blessed)  Moving the time in Maui would be possible, but not without a lot of hassle and additional costs. Dr. Priya said I would be fine to go to Maui in my third work of post-surgery recovery, but then we also discussed the length of the Taxol protocol.  I wondered if the 2nd part of the new protocol could be shorted:  I’d received 2 doses of Herceptin, and 1 of Perjeta.  So was it the Taxol of which I needed 12 weeks?  And my questioning was confirmed when I spoke with Jennifer Glover, the nurse educator who works with Dr. Ching, my breast surgeon.  I asked her whether I really needed to wait 4 weeks after chemo to have surgery (Dr. Ching insists) because I had this vacation planned. Jennifer was surprised that I was going to have 12 weeks of Taxol, and that confirmed my suspicion.  Dr. Priya said that 1 dose of Taxotere is equivalent to 3 weeks of Taxol, so it’s possible that we could reduce the Taxol by 6 weeks!  She also said that I could have Taxol after surgery if needed, and that this is where it’s the art of treatment comes in. I can appreciate that.  She said that she’d discuss it with the tumor board and let me know. We also talked about Perjeta – we’re not sure if the Perjeta or the Taxotere was what gave me such bad diarrhea.  I said that since I was approved for it, I’m game to have it again.  After all, I’m also much better about what I eat to avoid, or at least minimize, any diarrhea. So we’ll do that.

Speaking of diarrhea, I haven’t had any problems with it for a couple of weeks.  I was able to enjoy thoroughly New Orleans cuisine, and that was the blessing behind the tooth infection and extraction.  I love New Orleans:  the only bummer was that it rained pretty much the entire time I was there.  I was able to carve out some time to go the Quarter Stitch, a fantastic yarn store in the Quarter, and go to Cafe du Monde along with Emeril’s, Cochon and Clancy’s.  Oh, and fantastic breakfast at the Ruby Slipper.  And yes, I did attend sessions at the conference, which was why I was in New Orleans in the first place.

So all in all, things are going pretty well!

Not Too Bad! – March 25, 2015

The past two weeks have been very interesting!  It seems this new protocol might be easier on me, but it’s a little hard to tell.  I had to take Decadron (steroid) and Zofran (anti-nausea) for 3 days after my treatment, and usually if things start going south it’s after I’m no longer taking these drugs.  Things were fine for those 3 days, and true to form, starting Tuesday night, I started to feel wonky.  I wonder now if Ted and I didn’t get some virus, because we both were not feeling well; I had stomach cramps.  I didn’t eat much, which then, of course, meant that I was weak.  I actually got dressed to go to work on Thursday, but needed to pick up some prescriptions and almost passed out at the CVS.  And then the always lovely nausea returned Thursday night.

Fortunately, I had a couple of angels looking out for me!  My colleague Eric suggested that I try drinking Boost for the calories, protein and liquid.  So when my friends Jeremy and Nancy asked if I needed anything, I asked them pick me up some.  Well, am I ever glad I have awesome friends and colleagues.  I had a couple of Boosts that night, which stayed down, and I’ve continued to drink it.  I feel SO much better!  I have more energy, and feel almost normal.  And best of all things, the diarrhea has mostly stopped.  I still have to be careful with what I eat, because my body tells me immediately when I’ve made a wrong food choice, but the Boost has really helped.  So much so that I’ve worked some pretty long days, and reverted to my old habits, which is working until 1 or 2 am.  My colleague Julie admonished me for doing that, so I’m hoping to hit the pillow earlier tonight.  🙂

I’m still dealing with some of the effects of the Taxotere:  I’ve had neuropathy in my fingertips for about a month now, and about 2 weeks ago my hands starting peeling, especially my fingertips.  They’ve peeled so badly that I’ve lost my fingerprints and I can’t unlock my iPhone using the fingerprint sensor!  I know, 1st world problems.  My cheeks are still recovering from being cooked from the inside – they’re basically permanently flushed. I hope that the discoloration will go away naturally as the skin renews itself.

I finally had Ted shave my head.  The thin places were growing, and it was just time.  I have to admit I kinda like it.  It feels cool – literally and figuratively.  I think Ted might have found a second career – he’s done an awesome job as my barber.  He might be enjoying it a little too much.

I continue to be amazed by all the support I’ve received.  In addition to my angels Eric, Jeremy and Nancy, I got a huge package of homemade chocolate almond toffee from my friend John, and I think a 6.5 gallon tin of Garretts Chicago Mix from my Chicago boys Derek and Mike.  I am quickly going to gain any weight back that I’ve lost.  I’ve received cards, presents and FB messages from people I’ve never met and from people I haven’t heard from in decades.  I’ve had people offer to give me rides to my appointments or infusions, and others who have come to the infusion center to sit with me while I get my treatments.

On the flip side, some people that I would have thought would keep in close touch have seemingly disappeared from my life, or at least it feels that way.  I know that I’ve become a bit self-absorbed (I hope understandably so), and perhaps that’s the issue.  More likely, I think, are that some people can’t deal with what I’m going through for whatever reason.  It makes me a bit sad.  I wanted  – and needed – to be very open about what’s going on, and if it’s keeping some away, well, that’s an unintended consequence.  I can’t worry about it too much.  I have to concentrate on me.

Tomorrow I have a blood draw, then have to wait for the results before I meet with my doctor.  So I’ll be at the Oncology department all afternoon.  Assuming my test results are okay, I’ll have my 2nd infusion of Adriamycin and Cytoxan on Friday.  It should be a relatively short infusion and so I’m hoping to go to work in the afternoon.  Maybe my life is slowly getting back to “normal.”

New Chemo Protocol Started – March 14, 2015

Yesterday I received my new chemo protocol of Adriamycin and Cytoxan.  I’ll get 3 more infusions of these 2 chemo drugs over the next 7 weeks, and then Taxol, Herceptin and Perjeta over 12 weeks, once a week.  Let’s concentrate on these two drugs for now.

I arrived early so that I could receive the education about these new drugs.  My sister Lucy was with me; it’s always great to have another set of ears.  Adriamycin (generic name Doxorubicin) is an antitumor antibiotic.  It’s a vesicant, a chemical that causes extensive tissue damage and blistering if it escapes from the vein.  So it’s given via “push” – the nurse injects it into my port rather than by drip.  The other interesting thing is that the drug is a bright red, and for the next 24 hours my urine will be anywhere from orange to red!  Sort of like eating an entire can of beets…

Cytoxan (generic name cyclophosphamide) is an alkylating agent, most active in the resting phase of the cell.  Carboplatin, which was part of my first chemo protocol is the same type of agent.  Cytoxan is a mustard gas derivative; Carboplatin is a metal salt. The interesting thing about Cytoxan is that it used to be given over 2 hours, then 90 minutes, then an hour, and Velia said that it would be given over 30 minutes.  She said that one of the effects of giving it over 30 minutes is that I could feel sinus pressure and the start of a headache, and if that was the case, that I should ask the nurse to slow down the drip to go over 1 hour.  Lucy was thinking that we should just do the infusion over an hour.  Well, when it came time to the infusion, the nurse said that it would be given over an hour – that their experience is that the patients tolerated the infusion much better when given over an hour, so they’re going back to an hour rather than 30 minutes.

Now that I’ve had time to read the reams of information about these 2 new drugs, one of the slightly distressing things about both of them is a slight risk of developing a blood cancer such as leukemia.  Feels like I can’t win for losing.  But I really can’t worry about it right now.

Dr. K is still really concerned about my potassium level, and this time she wanted to check my magnesium level too.  Still related to my diarrhea issues, my potassium was fine, but my magnesium was incredibly low.  So after the chemo drugs were given, which didn’t take that long, I was given 3 gr of magnesium – which took 3 hours!  So while my infusion started early (9 am) it didn’t end until 3 pm.  Magnesium helps with regulating muscle and nerve function, blood sugar levels, and blood pressure and making protein, bone, and DNA which is important! The premeds included Decadron (a steroid) and Zofran (anti-nausea drug), both of which were given the first 2 treatments as well, but this time Dr. K added Emend, a long acting anti-nausea drug.  I think she REALLY wants me to have a nausea-free couple of weeks.  Now I can only hope that I also have a diarrhea-free couple of weeks, too!

In addition to the possible diarrhea and nausea, these set of drugs can cause mouth sores.  The first regimen does too, but apparently not as much as this set.  I was prescribed a compounded mouthwash to help with the mouth sores.  Obviously, aside from the pain from mouth sores the concern is that it makes it hard to eat, and I have to eat.  And from the Cytoxan, everything may taste metallic, even water.  So flavored waters, water enhancers, G2 will be my friends.  And from the Adriamycin, darkened nail beds.  I guess that’s better than nails falling off…

I got a visit during my infusion from my niece Alex, who’s home for a few days for spring break, and my friend and former colleague Lorrie arrived around 9:30 and stayed with me for the entire infusion.  It was great to spend time with her, and she was gracious enough to buy me lunch (I didn’t think I’d be at the infusion center as long as I was, so I hadn’t packed a lunch) and take me home.  I have such great support locally, and virtually across the country (and world).  Thank you to each and every one of you who have reached out in whatever way you have – cards, gifts, emails, Facebook posts, visits – all of your tremendous support is what helps me get through this very long haul.  With your help, I’ll get through this!  Onward!

One Day at a Time – March 8, 2015

What a difference a few days makes.  Since Monday, I have been feeling so much better.  No more nausea (and I’m not taking any anti-nausea drugs), and the diarrhea stopped after Tuesday.  I’ve been slowly expanding what I’ve been eating, and discovered that egg and tuna salads sit well with me.  An easy way for me to get protein, so I’m eating a lot of egg or tuna salad sandwiches.  I had sushi and sashimi last night, and so far so good.  What I’ve discovered is that I’ve lost my salt taste buds.  So nothing tastes salty to me.  Ironic, because I’m low in all my salt values and continue to take potassium pills.  I can salt my food liberally but I can’t taste it.  I can taste the soy flavoring, but not the salt itself.  It’s very strange.  All my other taste buds seem intact (sweet, sour, bitter).  Sour chewy Sweetarts, you are my friend.

I went to work this week, and by Thursday I was TIRED.  I was in bed by 9:00 pm that night, and asleep by 9:30.  I’m normally a person who gets between 4-5 hours a sleep a night, going to bed after midnight or 1 am routinely.  I’ve been going to bed earlier and getting at least 6 hours of sleep a night since I started chemo, and I’ve not had any sleeping problems except for perhaps 1 or 2 nights.  So for me to be asleep before 10 is highly unusual…but perhaps not now.  As I said to my sister the other day, nothing about this year is normal.

Dr. K prescribed antibiotics on Friday.  I think she remains concerned that my port continues to ooze some pus and just won’t heal.  That combined with the fact that my face basically got cooked from the inside – so much so that my high cheeks blistered and started oozing made Dr. K want to prevent any infections.  I also gave myself a bloody nose on Friday.  There I was at work with my head tilted back to stop the bleeding.  How did I get the bloody nose?  Blowing my nose!  I definitely think I caught a little cold or something – the post nasal drop has been non-stop.

The newest fun time?  My feet hurt, particularly my heels.  I thought at first it was due to my wearing pumps to work without wearing any pantyhose, but that’s not the case.  My heels are hot, and hurt to touch, which makes walking very painful.  I called the on-call oncologist this morning…and he consulted with Dr. K.  They both think it’s still due to the Taxotere, and told me to treat it symptomatically.  Ice the feet, take NSAIDs and anti-histamines.  I hope the pain resolves itself today and tonight – I leave for a business trip tomorrow and I don’t relish having to walk through airports and long hotel corridors with feet which hurt.  Not to mention that at conferences you do a lot of standing on your feet.

The second newest fun time?  My employer reduced my last 2 paychecks, but I received only 1 check from The Hartford, and it’s for only 1/4 of what is missing from my paycheck.  It’s very possible I don’t have enough to pay my bills this week!  I was not expecting this, because apparently I was spoiled by my last employer.  The other times I’ve taken disability, my former employer continued to pay me my full salary (as long as I had enough leave to cover, which I do), and obviously they worked out getting reimbursed by the disability insurance company. My current employer apparently likes to make things hard on the employee – never mind that this is completely adding to any stress that an employee may be feeling by being on disability in the first place.  I contacted Payroll on Wednesday, and received a reply that Payroll only processes what Benefits tells them to process, and that Benefits would need to contact me.  I haven’t heard from Benefits yet, so guess what my first call tomorrow will be?  I can’t say I’m happy about this situation, although I know that this too, shall pass.

Other than that, it’s a glorious weekend here in northern CA.  I got out to watch some Stanford baseball yesterday, and am headed there today too.  Nothing like a little baseball in the sun to lift one’s spirits.

I’m an East Coast girl – March 2, 2015

I won’t lie.  The weeks post-chemo suck.  With the sore throat, vomiting and ever present diarrhea, I’ve lost 15 pounds since I started chemo.  Not the way I’d recommend losing weight.  In addition, the scar from my port was infected; I got pus out of it on Friday, and then my cheeks, which are normally a little flushed, have been very flushed since the chemo treatment and never went away.  It’s like I’ve had a bunch of drinks and have massive Asian glow, or that I forgot to put on sunscreen and went skiing.  My cheeks are so flushed that the skin has started peeling.  And lastly, I took my blood pressure yesterday and it was 90/65, with a pulse of 96.  So I let my doc know all of this stuff and she wanted me to come in today for a blood draw and a visit with her.  After the first chemo treatment, my cheeks were a little flushed for a few days, maybe almost a week, but then they went back to what is normal for me.

Dr. K took one look at me and said, Oh my God, we have to do something else.  So after talking with her, and talking with her colleagues, she’s completely changing my chemo protocol.  She said that if I lived on the east coast, this protocol which she is starting me on would have been what I would have been on in the first place.  She’s convinced that the Taxotere is what’s causing most of my problems; I’m in the less than 5% of patients who exhibit these symptoms. She called this protocol the Harvard protocol; the one which uses the Taxotere is the UCLA protocol, and is used on the west coast.  I got a good chuckle out of that.  No rival Pac-12 protocols to be tolerated here, I guess – sorry Nancy S and Nancy D!

So here it is.  I’ll be keeping my appointment on March 13 for a blood draw, visit with Dr. K and chemo, but my infusion will be much shorter, only about 2.5 hours.  Here is the new chemo protocol:

Adriamycin and Cytoxan every two weeks for 4 treatments

followed by

Taxol, Herceptin and Perjeta once a week for 12 treatments

followed by Herceptin every 3 weeks for 1 year (this does not change)

She then said that my high pulse and low blood pressure is because I’m dehydrated and wanted me to stay for fluids with potassium, and told me to take 40 meqs of potassium every day until March 13.  The fluids took 2.5 hours to receive today, so that was unexpected, but equally unexpected was having Jonrie be able to visit with me! She brought me a great gift plus some awesome treats.  (Thanks, Jonrie!)  I’ll continue to take Zofran as needed; I’m taking it every 6 hours and thus far today I’m okay – I haven’t even felt the need to vomit yet today, so keep your fingers crossed.

What this new protocol means is that there is no more argument between my oncologists and my breast surgeon.  I’ll finish the 2 new treatments in mid-July, have 3 weeks off,  then have surgery the week of August 10.  Everything has fallen into place.  I can only hope that these new drugs don’t cause the same reactions as the first protocol have.  Dr. K said more than once that she appreciates having a patient who can go with the flow so easily and so intelligent as to grasp what is going on.  She also said she doesn’t want to give me back to Dr. Priya, which I found very funny!

I was getting a little dragged down, to be honest, with the prospect of non-stop diarrhea for another 12 weeks, coupled with these cheeks which look like I’m a alcoholic.  So I’m very hopeful that this new protocol, while more bothersome because of all the infusions, will, in the end, be easier on my body.  Here’s to science; to east vs west coast protocols; and a medical staff who’s willing to take my discomfort seriously. I’m blessed.

Happy Birthday to Me! – February 28, 2015

Today is my birthday, and I’m happy to say that thus far it’s been vomit-free.  But let’s back up.

I spent the day after Chemo #2 with my friend Nancy at Stitches West, the knitting convention, where I spent way too much money on more yarn than I’ll ever need.  We had fun regardless as we always do.  That night Ted and I joined my family for a birthday dinner celebration for my sister.  On Saturday, we went to the Stanford Men’s Basketball game vs. Cal (a win!) and then to the NHL Outdoor Stadium Series game, which was the Sharks vs. the Kings.  Levis Stadium was magically converted into an outdoor hockey arena, and while the Sharks lost, it was a wonderful experience.

On Sunday we went to the Stanford Women’s Basketball game and then I was supposed to go to work and then dinner with work colleagues, but halfway through the game I started to feel sick, like I was running a fever.  I definitely had picked up something which felt like a sore throat.  It might have been post-nasal drip, because it lasted only a few days.

My diarrhea started again earlier in the week, but I can manage it for the most part with a combination of Lomotil and Imodium.  Unfortunately, on Thursday I started vomiting. I’ve been taking Zofran, but I guess it wasn’t enough.  It’s a terrible feeling to be on the verge of nausea all the time.  So I’m happy today not to have thrown up.  I haven’t been eating all that much for a few days, which makes me weak.  It’s a problem, I know.  I need to eat more, so I’m hopeful that with today’s lack of vomiting (although I still feel nauseous), that I’ll be able to eat more.  I’m certainly going to have a piece of cake that Ted made for my birthday – diarrhea and nausea be damned!

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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