2nd Part of New Protocol Starts – May 16, 2015

Yesterday I received the first dose of the 2nd part of the new protocol.  Confused?  Don’t worry, Ted can’t even keep it straight.  When my original chemotherapy (Taxotere, Perjeta and Herceptin) didn’t agree with me after 2 (of 6) rounds, the oncologist switched me to a new protocol, which is comprised of 4 rounds of Adriamycin and Cytoxan, followed by 12 rounds of Taxol, Perjeta and Herceptin.

My day actually started very early…with a 3 am wake up to catch a 5:30 am flight from LAX to San Jose.  I was in Santa Barbara for a meeting on Thursday, but needed to be back in time for an appointment with Dr. Priya at 8:40, followed by chemo at 9:45.  Because I was early, I started my chemo early at 9:15, which was a very good thing.  I was in the infusion center for 9 hours!

The infusion always starts with saline, and pre-meds.  This time the pre-meds were Benedryl and Pepcid, both of which are supposed to help with the Taxol.  That was followed by Decadron, a steroid, which I’ve been getting each treatment.  Next was Perjeta, which I received at my very first treatment back in the end of January.  It’s also the reason I am having chemo before surgery; Perjeta is approved for insurance if given before surgery, but not after.  The Perjeta was given as if I was receiving it for the first time – slowly, and I had an hour waiting period to ensure I didn’t have an adverse reaction.  Then I was given Herceptin, followed by Taxol.  And, of course, magnesium.  The 2 hour infusion of magnesium didn’t start until 3:40, and by the time it finished, and then the wrapup of flushing my port and Heparin all finished, it was 6:15.

Dr. Priya decided to go “all in” and give me the full loading doses of Perjeta and Herceptin. Velia, Dr. Priya’s nurse, came by the infusion center and said that she expressed skepticism to Dr. Priya about the wisdom of that.  She said, “You weren’t here when Caroline went through this last time…” (Dr. Priya was on leave for the first 3 months of my treatments.) Basically, Velia thought that Dr. Priya was crazy to try it.  We’ll see who’s right!

Today I’m feeling great, but I know from experience that if I start to feel poorly it’s about 3 days later.  On the other hand, I also know what to expect, what I should and shouldn’t be eating, how to handle the diarrhea and/or nausea if it starts, so my hope is that things may be okay.  I do feel fortunate that the Adriamycin/Cytoxan treatments went so well that I was able to continue working with few incidents and go on my business trips.  My trip to Charleston was highly successful on many fronts. We had successful business meetings, did a little sightseeing in the pouring rain to Fort Sumter, and transported 2 cats home! I am involved in animal transport in my spare time as a volunteer, and I love it.  One cat was a military reunification, and the other was an outright adoption of a kitty from New York.  My next trip isn’t until August now, although work is heating up with a go-live date of July 15 for a database conversion.

At my appointment with Dr. Priya, I asked her if she’d had a chance to discuss with the tumor board about shortening the Taxol treatments from 12 weeks.  She said there was general agreement that it could be shorter, but how much shorter is the question.  She said that it would be at least 8 weeks, but that she was leaning more towards 10 weeks. It will depend on how well I tolerate the Taxol.  So let’s hope I do well, and that there are no complications so that the Taxol treatments can be 10 weeks long rather than 12.  If you recall, I have a vacation scheduled in September, and would love to be as far past my surgery as possible when I go to Maui.  I know, first world problems…but I can’t tell you how much I’m looking forward to some relaxing, healing time in Maui.

It will be interesting having chemo weekly. Cramps my life a little, but it is what it is. Let’s just hope I tolerate Taxol well!

All done with #4! – May 1, 2015

Woot!  Today was the 4th and last infusion of AC (Adriamycin & Cytoxan)!  It went really well; as has been true for the last few infusions, I also needed magnesium, so I was in the infusion center for another 6 hours or so.  Adriamycin is the “red koolaid” drug that I’ve been posting on Facebook – such a pretty red color.  It’s interesting to note that there is a lifetime maximum that I can receive of Adriamycin…just think how toxic it much be! Hopefully lifesaving toxic!

So how have I been doing?  It’s so clear that within 24-36 hours after coming off Decadron (steroid) and Zofran (anti-nausea) I have 2-3 bad days.  I was able to work through most of those days this last round.  There was only one day that I really could not deal with going to work, as I was feeling just all around crappy.  Not exactly nauseous, but feeling really icky and weak.  Already not a morning person, the chemo makes mornings even tougher.  Between the icky stomach and weakness, mornings are not my favorite time of day for 4-5 days.  The weakness has persisted some, but Dr. Priya that’s expected – the cumulative effect of the chemo.  I didn’t have diarrhea this time around (yay!) and ate much more normally than in previous rounds.  I mean I had vegetables!  Part of the success this time was that I am taking iron, which can cause constipation, so I think the effect cancelled each other out.

The worst effects have been neuropathy in my fingers and toes, and canker sores at the corners of my mouth.  I get canker sores at the corners of my mouth even when not undergoing chemo; probably a herpes virus whose effects are exacerbated by lack of leafy green vegetables in my diet coupled with stress.  However, the chemo also causes sores, usually mouth sores (in the mouth as opposed to externally), but Dr. Priya wasn’t surprised and suggested some topicals I can try in addition to my usual to try to help the pain.  For the neuropathy, Dr. Priya suggested taking L-glutamine.  She says it helps 50% of patients with neuropathy, so it’s worth a shot.  I had to pick it up at a GNC store-wow that was an eye opener.  The stuff they sell in there is not in my realm of experience.  On top of that, the dosage on the powder I got is 5000 mg, and Dr. Priya wants me to take 10!  So just a few grains, I guess?  The neuropathy isn’t terrible:  mainly in the tips of my fingers and toes, it does not prevent me from walking, and it usually mostly goes away on my right hand by the next infusion.  It’s never disappeared in my left hand since the first treatment.

So what’s next?  I leave for Charleston, SC on Sunday night and am there until Thursday.  I hope I can handle being at this conference and the effects of chemo at the same time.  At least I’m not presenting!  I’ll have my first treatment of the second phase of this protocol on May 15. The next protocol is Taxol, Herceptin and Perjeta.  Since Taxol is in the family as Taxotere, I’m a little concerned about the side effects.  I’m hoping that since the dose is lower and it’s a different drug that I won’t have the same problems.   I guess we’ll just see what happens.

During today’s treatment I had a craving for Jamba Juice; through the magic of social media, my friend Michael brought one.  My hero!  Then I had a hankering for pho, and poof! through the magic of social media, 7 of us had dinner tonight.  What serendipity!  It was great to have dinner with good friends, and I had a great time.  Life is good.

#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!

One Less Tooth – April 7, 2015

This new protocol is definitely better for me.  On Wednesday, which is usually when I start feeling badly from treatment, I did feel crappy towards the end of the workday, so I took off a little early, got home, and then took a 3 hour nap!  The next day we got early release at work in preparation for the Good Friday holiday.  I managed to do a volunteer training and still watch my beloved Cardinal win its 2nd NIT title in 4 years. I took it easy on Friday and thought I escaped any bad side effects from this round of treatment.  Oh well.

I think I didn’t eat or drink enough on Saturday – my routine was off a little because I was home, and it all caught up for me on Sunday.  I felt weak and shakey, but we had a day of activities planned.  I had to make my famous bourbon yams for Easter dinner, drop that and a ham off at my sister’s, then go to the San Jose Earthquakes match.  On the way down to the game – at the worst possible point on the drive down – I told Ted that he needed to pull over because I was going to vomit.  And vomit I did.  Good thing I had a cup in the car, because Ted couldn’t pull over in time.   I was still able to enjoy the game, despite the Quakes’ loss and a crampy stomach; by the time I got to my sister’s for Easter dinner I was feeling a little better, except for the diarrhea…I was able to eat Easter dinner, which was awesome.  It was good to spend time with my family.

Yesterday I had a blood draw and the counts were heading the right direction.  My magnesium is still low, but Dr. K gave me the okay to have my tooth pulled.  I thought I was going to get Versed for the procedure, and arranged for my sister to drive me home.  Turns out it was just a local.  The whole procedure took less than 20 minutes, and half of that was waiting for the Novocaine to kick in.  The infection definitely took it toll on my tooth – it came out very easily.  The dentist didn’t put a spacer in, so it feels odd to have a missing place.  The throbbing was pretty bad last night and this morning, but right now it’s very manageable.

Dr. H (dentist) explained to me why he insisted that I delay my next treatment until a week from Friday.  He said that if he allowed me to have chemo this Friday that my counts would start to head south, and I’d be unable to fight off the 147 different types of bacteria which live in a mouth.  He said that he could guarantee that he’d see me at Stanford Hospital with an infection I couldn’t fight if I had chemo.  So no chemo for me on Friday. The downside is that this potentially delays my surgery, and I have a very good reason for wanting my surgery to be the week of August 10, which I’ll explain later.  The upside is that I leave for New Orleans on Saturday – one of my favorite cities – and so I should be feeling really great and can enjoy myself.  And maybe enjoy that famous NOLA cuisine.

Dr. Priya, my oncologist, returns from medical leave on Monday, so now my appointments are with her.  I’ve like Dr. K a lot, but I love Dr. Priya, and I’m happy to have her back.  In the meantime, there shouldn’t be much happening between now and April 17.  At least I hope not.

Can I catch a break? – March 31, 2015

I had the 2nd infusion of the new protocol on Friday.  My friend Michael came to sit with me and brought Jamba Juice.  The infusion should have been short, except my magnesium was still low, so I needed to get 2 grams over 2 hours.  So it was another 5 hours in the infusion center.

I had a busy weekend.  My friends Amanda, Angie, Catherine, Melissa and Nancy attended a free knitting workshop held at Bay Area Cancer Connections, which was a ton of fun. Angie drove 4 hours to attend the workshop, and then stayed for the weekend, which is great because it was her birthday weekend.  Lunch, movie, dinner, breakfast – the weekend flew by and it was awesome to spend time with Angie.  And as a plus, I was feeling pretty good.

Except for…on Wednesday, I woke up to some pain in my lower left molar.  This happened before, in August of last year.  Back then, the endodontist said that there was nothing wrong with the root, but it could be that the tooth would need to be extracted.  He gave me some antibiotics and the area calmed down, so I didn’t worry about it.  With 20/20 hindsight, I should have had the tooth pulled, because now my tooth is infected again, and because of the danger of infection, it will need to get pulled.  The tooth is cracked, and when I grind my teeth, the crack irritates the surrounding area, and in this case, it’s gotten infected.  It’s a balancing act between my blood counts and how infected the tooth may be, to decide when to pull it, how to treat it when pulled and when I can have chemo.

I had a blood draw today, and my counts are heading south, so I can’t get the tooth pulled this week, which the dentist wants to do.  I’m on antibiotics for the infection, so hopefully things will calm down.  I’ll have another blood draw on Monday, with hopes that I can get the tooth pulled on Wednesday.  The dentist would like to delay my next infusion until the following Friday, but I’d prefer to have it on the 10th as scheduled. Dr. K is fine with that, so I need to talk to Dr. H (dentist).  And hope that my counts are okay by Monday.  The pain from the tooth is pretty bad, I have to say, and my pain tolerance is pretty high.  There’s something about tooth pain that just makes one miserable.

I’m a pretty optimistic person, but boy, it sure feels like I can’t catch a break.  At least the effects of the infusion isn’t too bad:  the worse is the peripheral neuropathy in my fingertips.  Even though I’m off the steroids and anti-nausea drugs today, I’m feeling okay other than my mouth.  Just a little diarrhea (which I’ve gotten really good at managing), and no nausea yet.  In the meantime I’ll take lots of Advil and Tylenol, and hope the antibiotics will kick in soon.

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!