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.

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!