A Year Ago Today – January 29, 2016

A year ago today I had my first chemo infusion.  Little did I know that day what my year would be like.  It’s a little surreal to think about all that’s happened.

After last week’s infusion, I stopped to talk to a young woman who was just starting her chemo treatments.  She and her family had a lot of questions, which I hope I was able to answer.  What I found interesting was that I’ve actually forgotten the names of my chemo drugs, except for Taxotere, Perjeta and Herceptin.  I had to look them up to remember what I got and when.  Honestly, I don’t think I’d wish chemo on my worst enemy.  And I don’t think I had it as bad as some folks.

It’s been a while since my last post!  The holidays were nice; my whole family was able to gather for Christmas Eve.  Our dryer broke (it’s okay, it was over 25 years old) so we ordered a new one, but that meant cleaning out a path in the garage so it could be delivered and installed.  That took up much of what free time we had over the holidays. And then we left for Anaheim and the Rose Bowl – a little vacation with friends.  We went to California Great Adventure, Disneyland, and, of course, the Rose Bowl, where my beloved Cardinal destroyed the Iowa Hawkeyes to win its 2nd Rose Bowl in 4 years.  We drove back on the 3rd, and when we got home, I was feeling off.  I thought it was just the busy vacation.  I took the morning off and then headed for chemo on the 4th.  I was running a little fever, 99.1 degrees.  Well, that was just a precursor to the worst flu I’ve had in years.  I got a flu shot, but apparently it wasn’t very effective this year.  With all the people at Disneyland/Great Adventure and the Rose Bowl, I’m sure I picked up the flu bug there.  I had a fever of 103.3 for a night, and over 101 for several days.  And then I got a cough which I still have, although it’s getting much better.  Not the way I wanted to start 2016!

When I was finally able to go to work, it was to unpack my office – my staff and I moved locations while I was home sick.  I’m finally starting to feel settled at work, and we love our new space.

At my appointment with Dr. P last week, I asked her if taking Vitamin D would help with my muscle aches.  I also asked if I should contact my PCP about switching out one of my high blood pressure meds, as was suggested by Dr. S’s consult with the nephrology doctors, to help with my low magnesium.  So now I’m taking Vitamin D and I’ve changed one of my meds.  This week I’ve had my usual bout of diarrhea.  I also had a terrible headache on Monday, and I’ve had terrible muscle aches.  I know the Vitamin D, if it’s going to help, will take a few weeks to kick in.  But I decided to look up the side effects of Herceptin again, because I’ve obviously forgotten.  First 3 side effects?  Diarrhea, headache, muscle aches!  So I guess this will continue until at least May.  I think I’ll take Imodium every night for a week after my next infusion to see if that helps with the diarrhea; I can take Advil for headaches and I’ll hope the Vitamin D helps with the muscle aches (Advil helps with that).

Here’s to 2016!


A Good Week! – June 19, 2015

With a week off from chemo, and just receiving Taxol and Herceptin last Thursday, this week I felt pretty good.  My BP hasn’t dipped low (I stopped taking my high blood pressure meds), and I’ve been making sure to drink plenty of fluids.  Basically I drink 30 oz first thing in the morning, which ensures that I get at least 1/3 of the 90 oz they want me to drink every day from the start of the day.

On Friday I had my appointment with Dermatology, to look at all of my nails.  I wouldn’t say that was the most productive appointment:  I received an antibiotic  ointment to use when my nails start falling off; the doc told me to keep my cuticles super moist (she suggested using Aquafor, which I’m discovering is the solution for everything) to try to keep the seal that cuticles create with the nails.  She did say that my skin looks terrific for undergoing chemo, so that was a plus.  I’d already lost one fingernail by last Friday, and today I lost another when I hit the gear shift in my car just right.  Both on my right hand, I’ve lost the nail on my forefinger and 4th finger.  I think I should have invested in Band-aids! Neither nails were the ones which were infected and caused the fever.  I guess it makes sense that I’d lose fingernails first because the hands get used for all sorts of things. The toenails were first to start separating from the nail beds, but for now they’re all still there.

I was able to go to work Monday-Wednesday this week.  Yesterday I had to take my car for servicing, so I worked from there and then home.  I got a blood draw first thing in the morning.  I’ve felt pretty good all week, and had very little diarrhea.  Once was when I forgot to have some yogurt while taking antibiotics and once when I couldn’t resist and ate a lot of cherries.  I love cherry season, but eating them in the quantities I can (and do) gives me diarrhea when I’m not undergoing chemo, never mind now!  Either way, I’ve learned to manage the diarrhea pretty well.

While I was at the car shop, Dr. Priya called to tell me that she was able to prevail and that the Perjeta was approved from this point forward.  PAMF will have to apply to have the May 15 treatment retroactively approved; on my insurance site that claim’s status has changed from “Denied” to “Pending” so I’m thinking that’s a good thing.

When I got home, I got a call from Velia, who informed me that while my counts looked good (mag was low at 1.2), my hemoglobin had fallen from 9.4 to 8.1 and that I would need a blood transfusion. At today’s infusion, they took blood to be typed and crossed, and I’ll have the transfusion after my breast MRI on Monday.  A transfusion takes 4-5 hours, and there is no time for a directed donation.  I need the transfusion on Monday, and for a directed donation, Stanford Blood Bank would need to do all sorts of tests – which would take a week.  Plus, insurance won’t pay for a directed donation transfusion (surprise, surprise).  So I have to trust that Stanford Blood Bank has done its job in screening and testing the blood I’m going to receive.  Because I’m getting chemo weekly, I’m figuring that my hemoglobin doesn’t have time to recover, which also explains the urgency in getting a transfusion on Monday.

The approval of Perjeta meant that today’s infusion was Taxol, Perjeta, Herceptin, and the ever present magnesium.  We had a little trouble drawing blood from my port, which is very unusual, but eventually we got what we needed.  After the pre-meds, the blood draw, and the chemo and mag, I finally left after 7 hours.  I woke up at 4 am this morning and couldn’t go back to sleep, so I’m super tired tonight.  I suppose I might have taken the Decadron a little late last night, which could be why I didn’t sleep well.  I don’t think that will be a problem tonight.

I’m off cycle a little:  I should have received Perjeta last week.  I don’t know what that means for how many more treatments I will get, and how many more treatments of Perjeta I’ll get.  I did get a phone call today while in the center from Jennifer the nurse educator, who said that it looks from my chart that Dr. Priya was planning on 8 treatments total, and that meant I should see Dr. Ching (breast surgeon) to start preparations for surgery.  I thought Dr. Priya wanted 10 treatments, so I’ll have to ask her when I see her next, but in the meantime I’ll be scheduling an appointment to see Dr. Ching soon.

Did you catch that I mentioned a breast MRI on Monday?  Yep.  I’m going to have another one to see if the chemo is doing its job and reducing the tumor.  Neither Dr. Priya nor I can feel it anymore, so the chemo has got to be reducing it, but we can see by how much.  Dr. Priya also wanted to make sure that the chemo WAS doing its job, because why put me through all this chemo if it wasn’t working.

I’m really happy that I had the forethought to go to Sephora before I started chemo to learn how to draw eyebrows.  It’s kind of shocking to see just how few eyebrow hairs I have!  and I have exactly 1 eyelash on my left lower lid.  I wonder how long that lone soldier will last.  The hair on my head is what I’d call just really, really thin – Ted hasn’t shaved my head for a couple of weeks, so I can see the hair growing.  It’s mostly white 😦 and just thin all over my head.   I may keep a shaved head even after I’m done with chemo. I like looking badass, and I’ll save a ton on hair product!

We have a relatively quiet weekend ahead of us, which is good.  I need to finish online traffic school, write performance evaluations, and work on my conference presentations. Aside from a late lunch tomorrow with our friends Jess and Matt, we’re homebodies.  And it’s a good thing – I have an incredibly busy week ahead.  I’ll tell you all about it next time!

Disappointing News – June 4, 2015

I had my usual blood draw today, and then an appointment with Dr. Priya.  While my blood counts are good, my potassium and magnesium levels are low.  I’m sure it’s due to all the diarrhea I had this week.  In addition, my blood pressure was extremely low – 88/61. In order to help with the blood pressure, I need to drink more fluids, but with the low potassium , more fluids can make the potassium even lower.  Dr. Priya wants to give my body a few more days to recover, so I won’t be receiving chemo tomorrow.  I will go to the infusion center, but to get fluids, potassium and magnesium.

I’ll have a blood draw on Monday, and if all is better, I can have chemo on Tuesday.  The delay is disappointing, but in the end, what’s important is my health.  The labs and low blood pressure explain why I’ve felt so weak and dizzy, with headaches.  So this weekend I need to try to get the diarrhea under control, drink plenty of fluids, and eat well.

Dr. Priya is going to order another breast MRI, to make sure that the chemo is reducing the cancer.  Why continue to go through this if the chemo isn’t having an effect?  I haven’t been able to feel the lump since the first treatment, though, so it will be interesting to see what the breast MRI will show this time around.

Here’s to hoping I have  a better weekend, and that the only delay in getting chemo is until Tuesday.

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!