Moving Fast – August 1, 2015

Things are moving right along!  My surgery is scheduled for August 12.  I’ll have the surgery which was originally planned for in January, which is a lumpectomy (aka segmental mastectomy) and a lift on both breasts.  While the plastic surgeon is doing the lift, Dr. White will also remove a lipoma (fatty, non-cancerous mass) on my left breast.  That lipoma is probably the reason I didn’t think much of any growth I felt on my right breast during self-exams, so thank goodness for annual mammograms.

I’ve already received the surgery instructions, and I was sent a microbial soap with which to shower on the morning of my surgery.  I think it’s the same soap that surgeons use to scrub before a surgery.  Prior to the surgery, I have a needle localization procedure done, and then Nuclear Medicine will inject a dye to help identify the lymph nodes.  The paperwork currently states that Dr. Ching  will remove the sentinel node and possible removal of axillary nodes.  I thought that because I had chemo first, that Dr. Ching was going to remove more than the sentinel node for sure, so I’m cautiously optimistic that perhaps fewer lymph nodes will be removed than I thought.  The more nodes she removes, the higher the risk of lymphedema.  The lymphatic system is the body’s garbage removal system, and removing nodes can cause a blockage, resulting in swelling, or lympedema.

Prior to August 12, I’ll need blood work (surprise, surprise) and an EKG.  I’ve had both, so no sweat.  I’ve had 5 surgeries – all orthopedic in nature – so I know that when I hit 40, an EKG was required.

This is the first update in a while – things have been very busy.  We went live with the new database system on July 15, a 2 year project to convert from the previous database.  There is the inevitable shakeout from a system change, but all in all, the conversion went fairly smoothly.  In the meantime, I have been preparing for a conference of which I am the chair.  I leave tomorrow morning at 6 am for Boston and return late on the 8th.  We are moving my mom to a residential care facility that weekend (thank you Ted for helping on Saturday), I go to work for 2 days, and then my surgery is on Wednesday and I’m off work for 7 weeks (6 weeks leave, 1 week vacation). After that, though, the second big hurdle in my treatment is complete, and I will admit to a bit of excitement about the progress.

Yesterday I had chemo.  Yes, chemo.  While I am done with Taxol, or what I’m calling “general” chemo, I still have targeted chemotherapy.  Dr. Priya wanted me to take full advantage of getting approved for Perjeta and gave me a 4th dose yesterday, and I also received Herceptin, which I will need to receive until probably May at this point.  I also received magnesium, but only 1 gram – my magnesium level is finally climbing back up. It was actually really great to see all the chemo nurses – I’ve gotten to know almost all of them and they are wonderful.

Targeted chemotherapy is not immuosuppressive, which means, theoretically, that my blood counts should be on the rise back to normal.  Indeed, my hemoglobin was 11.4 without the help of a blood transfusion, and all other counts are heading to normal  (in case you’re curious, both Perjeta and Herceptin are monoclonal antibodies.  Each targets a particular part of the HER2 cancer and blocks the HER2 receptors.)  The nature of targeted chemotherapy allows for me to get chemo just 12 days before surgery.

Of course, I had to have some last minute excitement…my left ankle has been swelling the last few days.  A few weeks ago, both ankles were swelling, but after a week of sleeping with my legs elevated the swelling went away.  Because the swelling was only in one ankle, I had an ultrasound to rule out a blood clot (aka DVT, or Deep Vein Thrombosis).  Typically swelling resulting from chemo would be in both ankles, hence the concern.  The ultrasound was negative for a DVT, though, so I guess I’m having yet another unusual reaction to the Taxene family of chemotherapy.  There is a little concern because I’m flying tomorrow, but I’ll wear the ever sexy compression stockings and continue to sleep with my legs elevated.  The good thing is this morning the ankle is almost back to normal.  We’ll see how it is after a day of activity today.

I am excited for my trip!  I am transporting a 13 week old Siamese kitten to her mom with me, and then I get to spend a week with 6 fabulous colleagues.  We have almost 100 participant registered – a 50% increase over last year – and we will be in one of my favorite cities.  I am doing a visit with one of the vendors we use, which will be really fun, and then I get to geek out with like-minded folks.  This conference is my favorite: while it’s not an insignificant amount of work and energy, it is also the most fulfilling because you really get to know the participants.  You’re with them for 5 days, working with them on team projects, and seeing the same folks in sessions.  There’s time to socialize and get to know each other in that way, too.  It’s the first time (for me) this conference is in a more urban surrounding, so I’m curious how/if that changes the nature of the conference.

I probably won’t post again until after surgery, and since my arm movements are restricted for a couple of weeks, it may be awhile!  I’ll take all positive thoughts (and prayers, if you’re inclined) that everything goes well!

WOOT! No More Taxol! – July 14, 2015

I met with Dr. Priya today, and I got the news I wanted:  NO MORE TAXOL!  She agreed with Dr. Colocci that 8 weeks of Taxol, in combination with the Taxotere I’d already received, is enough.  This means that I can move onto the next stage of my treatment, which is surgery.

As I also suspected, though, Dr. Priya does want me to receive one more round of Perjeta, so that I’ll have received 4 treatments.  So I’ll have that in a couple of weeks, along with Herceptin.  I’ll continue to receive Herceptin every 3 weeks from now until March/April, except for a few weeks off around my surgery.  All this means that the timing just might work out for my already booked vacation at the end of September, even if I need 2 surgeries to get clear margins.

I called Jennifer, the nurse educator, to give her the good news, and to get the process started for my surgery.  There are a lot of things to get lined up now.  And I suppose there might be decisions to make.  Originally I was opting for a “lump and lift” – a lumpectomy along with a breast lift of both breasts.  Now that there’s no tumor to remove, I’m not sure that a lump and lift is still a viable option.  I suppose I’ll have a whole new round of appointments soon with Dr. Ching and Dr. White, the plastic surgeon.  Regardless, I’m happy that I won’t need any more general chemo.

Last Friday, which as it turns out was my last general chemo infusion, I got the whole cocktail – Taxol, Perjeta, Herceptin, and my friend magnesium.  That made for another 7 hours at the infusion center.  I’m going to miss my long sessions at the center – I’ve gotten to know the nurses pretty well, and certainly the routine.  I’ll continue to visit the center, but my sessions should now be much, much, shorter.

As has been true for the past 3-4 weeks, I’ve been able to handle the side effects of the chemo much better.  I still have diarrhea, but it’s mostly under control.  Most importantly, I’ve managed to avoid nausea.  I really am convinced that drinking 30 oz of water first thing in the morning – before doing anything – has helped with the nausea.  They are quite serious when they said to drink 90 oz of fluids a day!  My advice to anyone getting chemo – drink that 90 oz!  For me, drinking 30 oz first thing in the morning jump started my intake for the day – I probably routinely drink 60 oz during the day, and the additional 30 just ensured that I was getting enough fluids.

On Saturday I went with 3 friends on a “yarn crawl” – think pub crawl only one visits various yarn stores rather than pubs.  I spent far too much on yarn that I don’t “need” but had a ton of fun!  I can’t wait to go on another one!  And the organizer is thinking of organizing a weekend retreat on the coast, complete with private classes.  I’m all over that!

This is a very big week at work for me…we go live tomorrow with a new database system.  A 2 year project, I could not have done it without the fantastic people with whom I work.  Truly, I am blessed, both professionally and personally –  today is my anniversary!  Happy 30th anniversary, sweetie!

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!

If It’s Not One Thing, It’s Another – June 11, 2015

Let’s start with the end today.  I received Taxol, Herceptin, 2 grams of magnesium and 1 L of saline.  I was at the infusion center for 6 hours again, and my friend Nancy brought me lunch because I forgot my lunch at home.  Thank you, Nancy!

Astute followers will note that I did not receive Perjeta which I should have this time, every 3 weeks.  I did not receive it because some lackey at Anthem Blue Cross decided to deny the Perjeta for the Taxol protocol, even though it was approved for the Taxotere protocol. It also means that right now I’m on the hook for the round of Perjeta I received in the first round of the Taxol protocol on May 15, to the tune of $26,000. I sure hope Dr. Priya is able to prevail.  It makes absolutely no sense to approve it for one protocol and not the other when both protocols are NCCN (National Comprehensive Cancer Network) approved.

Why did I get 1 L of saline?  Because when I arrived at the infusion center, I was obviously struggling and did not look great.  Indeed, my BP was 84/54.  Why was my BP so low? Apparently I didn’t drink as many fluids as I thought I did yesterday, but I also had a fever from Sunday until late Tuesday night.  Turns out that the fever was probably caused by infected fingernail beds.  I got antibiotics on Tuesday, the infections have seemed to have cleared up, and I have an appointment with Dermatology tomorrow.  I don’t know what I’ll be told, but I estimate that I’m going to lose 8 toenails and 4 fingernails. The nail loss is an extreme side effect of Taxotere. Seems I got ALL the extreme side effects of Taxotere. Lucky me.

Because I looked so terrible when I arrived, and my vitals were terrible (in addition to the low BP my pulse was 125, which meant my heart was working way too hard), Dr. Priya thought about delaying my chemo today.  Her compromise was to give me 1L of salne, recheck my vitals, and run the rest of my labs while I received the saline (over 2 hours).  I got a blood draw on Tuesday, but only a CBC to check my white blood count – to see what the fever was doing.  My WBC was fine, which is why I showed up today for my infusion. So they ran my magnesium and a basic metabolic panel, mainly to see how my potassium was doing. My potassium was normal at 3.8 (yeah, the oral meds are going the job), but my magnesium, while better, was still low at 1.3.

When I’d received about 750 mls, my vitals were taken again, and my BP was 95/66, and my pulse was lower at 116.  So we went ahead with the Taxol and Herceptin today, which made me happy.  Amazing how sleepy IV Benedryl makes me – I always end up taking a nap!  By the end of the infusions, my BP was 107/79 and my pulse was down to 109.

The facepalm of the day was the realization that I’ve still been faithfully taking my high blood pressure meds…so I’m off them for now (upon Dr. Priya’s orders and notifying my PCP), and I’ll be checking my BP every night. Hopefully that will help.

The other piece of news I received this week is that my hemoglobin is on a steady decline, and is currently 9.4.  If it goes down below 9.0, there’s a very good chance I’ll receive a blood transfusion.  It’s yet another reason for my increased dizziness, especially from a sitting to standing position; for my shortness of breath, and why I get tired more easily. Just another side effect of chemo, but having to receive a transfusion doesn’t make me very happy.  I’m hoping I can get a directed donation, which at this point looks like Ted, who is the universal donor.

I’ve had kind of a crappy 2 weeks, between the low potassium and magnesium and delay of chemo, followed by fever…At least I had a great day on Saturday.  We delivered a cat which was being transported to Arizona (I’m involved in volunteer animal transport) and then took a drive over to the coast.  It was a gorgeous, glorious day – the kind you can only find in California, and we had a lovely day.  All is not lost.  Things are looking up, and I just have to focus on the next week.  I can’t worry about things currently not in my control (like insurance approvals), and I just have to live each day at a time.  That’s how I’ll get through this.  That, and a wonderful support network of family and friends.  I’m still blessed, and I know things will be okay.

Good, and bad – June 5, 2015

I went in for my infusion of potassium and magnesium, and the 4 hour drip was a breeze.  My BP was 108/80 today, and while my pulse was 128 when I arrived by the time I finished it was down to 99.  All good signs that the drip did its thing.  The question now is whether I can keep my potassium and magnesium levels okay.  Given that I had diarrhea today, I’m not very confident, but I’ll be more careful about what I eat and much more diligent in taking Lomotil or Imodium after every bout.

The bad news is that currently I’m scheduled for chemo on Thursday, which means I’ve essentlally missed a week.  The reason, other than to give my body a chance to recover, has to do with insurance.  If you recall, the reason I’m having chemo first then surgery was that one of the drugs for my type of cancer – Perjeta – is only approved by insurance for neoadjuvant therapy, so the typical order of surgery, chemo, radiation was altered to be chemo, surgery, radiation.  The reason it’s important to have insurance pay for Perjeta is that it’s $26,000 a treatment.  My insurance has paid for the Perjeta I received in January; I received it again when I started this new protocol of Taxol with Perjeta and Herceptin 4 weeks ago.  It’s not clear whether that treatment was approved, but I do know that Dr. Priya needs to do a peer-to-peer justification for me to receive more.  That justification is on Monday, and in order to give the review some time, PAMF didn’t want to schedule me for chemo on Tuesday.  By the time this was all figured out, Wednesday was booked, so here I am, scheduled for chemo on Thursday.  My infusions are super long, 5-6 hours, so it’s not like they can slot me anywhere for an infusion.  Still, I asked if there was a cancellation on Tuesday or Wednesday and if my treatment was approved if they could call me.

I know I shouldn’t be so focused on the timing for my vacation, but while I am going to relax and heal, I still want to have some fun.  I just have to relax and have faith that it will all work out.  One option that Dr. Priya mentioned is that I could also have chemo after surgery – but if that’s the case, I won’t be receiving Perjeta, unless that therapy is approved for adjuvant therapy in the intervening months.  She could decide that 6 rounds of Taxol is enough.  (I think my body would agree with that…)  The puzzling thing is that Taxol is supposed to cause constipation; Perjeta can cause diarrhea, but any Perjeta when this protocol first started is well out of my system.  The diarrhea has gotten worse, so I’m convinced my body simply does not like the Taxene family of chemo drugs.  I’ll gladly take the Red Devil over any Taxene drug…but there’s a lifetime maximum of Adriamycin.

So…good and bad.  I’m feeling tired but okay right now.  Certainly I do not have any dizziness, some weakness is normal.  I’m drinking a lot, and need to remember to continue to drink a lot.  I probably am not drinking enough, especially considering the diarrhea.  Let’s hope things improve this weekend.

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!

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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