Independence

I'm here to tell you that going from SOME steroids to NO steroids sucks.  It sucks a lot.  This has been the worst of the steroid step-down yet!  This week, I have had fevers (up to 101 F; oddly enough, they mostly start in the evening and are gone by morning; I'm probably the only one who has been sleeping under two blankets in this hot weather), fatigue, swollen joints (particularly knees, hands, and feet), and nausea.  Oh, and allergic reactions!  The steroids have been keeping all of my allergies at bay, including my normal allergies to pollen, but now that the steroids are gone my immune system is waking up to all sorts of insults.  In fact, my body has decided to be allergic to sunscreen, so I have itchy red bumps on my arms.  Needless to say I will soon be the proud owner of a long-sleeved swimsuit. 

Today I felt quite a bit better, finally (my last steroid was Monday morning; I felt mostly fine on Tuesday; the crummies started in earnest on Wednesday).  I even accompanied the kids to the pool today.  Nay, I DROVE them to the pool.  Because I can drive now!!  Although the process of getting off the steroids sucks, being off the steroids doesn't suck.  Huzzah for driving! 

When my youngest, E, found out that I was no longer taking steroids, she ran through the house shouting, "Mom can drive!  And eat pie!"  I presume the latter part of this is because when I first started taking the steroids, people were bringing us pies, but then Dr. Oncologist told me to eat less sugar because steroids interfere with the body's ability to process sugar.  So I quit eating pie.  And E thought that that was a big bummer for me.  She has a big heart. 

You might be thinking, was it weird to drive after 6 months of not driving?  Because I thought it was going to be weird.  But it wasn't at all!  I kinda spooked myself a bit--I checked the mirrors approximately a bazillion times before backing out of the driveway, I was super cautious at stop signs, etc.  I didn't want to screw up and lose driving privileges!  But beyond that, it didn't feel unnatural to be behind the wheel.  The weirdest part is going to be getting back into the habit of driving.  That is, we are all used to me not driving, so Ian continues to nominate himself for family errands.  But I could do that! 

It was at my appointment with Dr. Oncologist on Friday that she told me I could drive.  Also at that appointment I learned that I can quit taking the prophylactic antibiotic (it was preventing a particular lung infection--mission accomplished) and doing the 4-times daily anti-fungal mouthwash (this was preventing a thrush infection--mission accomplished).  HUZZAH for no more antibiotics and gross mouthwash!!!  I swear that when she prescribed the antibiotic, she told me I'd have to take it for 6 months.  Needless to say, I didn't argue with this turn of events!  She did say that I'm to keep taking the valacyclovir, which is to prevent shingles.  But there's really no side effects to taking that, so it's okay. 

Also at Friday's appointment, I got scheduled for a bone scan.  Bummer!  This is because I have a sore spot on my chest wall.  There's no bump or redness, just a bit of soreness.  It started about a week ago, and I figured it was related to coming off the steroids (its adjacent to an area of increased fat deposition).  This chest-wall pain has happened once before, and after doing the scans and seeing that there was nothing wrong with me, I was told that it was probably just my screwed up nerves (from the mastectomies and radiation) and I should rub the area to desensitize the nerves.  That worked.  The screwed up nerves aren't doing me any favors now, either, because I can't tell exactly from whence the pain is originating.  I think it's superficial, that is, originating in the skin and not the ribs, but I can't be sure.  Dr. O therefore ordered the bone scan to rule out an explanation for pain in the ribs.  This bone scan will be on Tuesday and will take 3 hours (inject me with some crud, then scan me 3 hours later).   I'll get the results at the end of the day on Friday. 

Happy Independence Day, everyone!  I will be celebrating my independence from steroids! 

Winning the war

Yesterday was my last dose of FEC, as long as there are no more surprise revisions in my treatment plan.  I will have a major huzzah after I get through the FEC aftermath.

I have been fighting many battles over the last 24 hours.  FEC sucks, man.  The first battle I fought was that mysterious allergic reaction to one of the components of FEC (no one knows which one).  Dr. Oncologist's strategy was to prevent an allergic reaction by increasing my dose of steroid (dexamethasone) from 12 mgs to 20 mgs, and my dose of benadryl from 25 mgs to 50 mgs.  I should also say that I did my part by taking the anti-allergy drug Zyrtec prior to the appointment.  Despite these preventative measures, the allergic reaction started up again after receiving the F, the E, and 15 minutes of the C.  It felt like I had snorted black pepper.  The nurse stopped the dose of C, and Dr. O gave me another round of benadryl and 'roids, for a grand total of 100 mgs of benadryl and 40 mgs of steroid.  I asked her, is this legal?  She just laughed at me and said she could give me more if it came to it.  The peppery feeling completely went away after this, so we resumed the C.  Soon after resuming the treatment, the peppery feeling came back and got worse; it was the burning feeling you get when you get water up your nose.  The nurse stopped the C again and waited with me for a bit.  The good news is that the allergic reaction never got worse.  My throat never got sore, my skin never flushed, and, most importantly, my lungs never tightened.  After a few minutes Dr. O came back into the room, assessed where I was, and asked me what I wanted to do.  I said I wanted to finish the C!  As long as my lungs remain clear, bring it on!  I therefore received the full, final dose of C, with little more than a peppery feeling in my nose.  Boom.  Huzzah!

I was more of an innocent bystander in the second battle of my day and night.  This battle was between benadryl and dexamethasone (the steroid), fighting for control of me, aka Side-Effect Hill.  Benadryl quickly gained control of my eyelids, but dexamethasone had a stronghold on my heart.  The dex hunkered down, commandeering my heart to pound out the drumbeats of war, all night long.  Benadryl made numerous offensive strikes, claiming an hour or two of sleep at a time, but overall the strikes were unsuccessful against the entrenched dex.  I finally dragged myself out of bed at 9:30 am, only to go downstairs and take another dose of each drug (as ordered by Dr. O).  I only have to take the benadryl while I feel the peppery nose (yep, still peppery) to prevent the reaction from worsening, and I only have to take dexamethasone one more time tomorrow.  The Battle of Side-Effect Hill will likely continue for at least another night or two.  Damn side effects.  Damn peppery nose.  Good thing I have a comfy couch for epic resting.      

The battles are tough, but I am winning the war.  The FEC has done it's job:  the breast cancer seems to be completely gone.  The tiny lump that Dr. O and I can feel could simply be scar tissue from the biopsy, that's how small it is.  My previous drugs (TCH+P) reduced the cancer substantially, but the FEC has obliterated it.  The most noteworthy fact, in my opinion, is that I had one lymph node adjacent to the cancer that felt swollen throughout all of TCH+P treatments.  In contrast, I can no longer feel this lymph node after three rounds of FEC.  In summary, let it be known that I am grateful for the FEC and remain humbled by its cancer-fighting powers.  But good lord am I glad that the havoc it wreaks is almost over.

Finally, I have an appointment for a PET scan on Tuesday, July 8th.  This is three days before resuming three more rounds of the TH+P-C treatment.  I normally hate PET scans because I frequently have false positives (I know they are false positives because I've had to go through the explorative procedures to prove it).  This one, however, excites me because we will see that nothing is glowing in my lungs.  I never felt like I had lung cancer, and I definitely don't feel like I have it now.  Dr. O did not say anything about the results of this scan changing the course of my treatment.  I am not even allowing myself a glimmer of hope about that.  But I agree that it's a good time to assess what's going on in those lungs.  I am quite curious.  Quite.  Again I say, bring it on!  Huzzah!

I'll end with a public service announcement.  I wrote this post while listening to Ray LaMontagne's new album ("Supernova") on Spotify.  Wow, it's excellent.    

Double down

I will never have to take carboplatin again.  Carboplatin is the C in my THC+P cancer-fighting regime.  This is one of the two general mitotic inhibitors that I am taking to inhibit fast-growing cells in my body.  It's one of the two drugs that makes my hair fall out and kills my immune system.  But never again will it enter my body, because carboplatin raised the stakes yesterday.

Carboplatin, or carbo as I will henceforth call it, is known to cause immune reactions in people who experience multiple doses.  I had my first carbo reaction three weeks ago, which was my 8th lifetime dose of carbo.  This was a textbook case, as the literature says that the 8th dose is the most common time to see carbo reactions.

We then had some decisions to make.  What to do about carbo?  We doubled down on carbo.  Dr. Oncologist decided to premedicate with antihistamines and give carbo one more chance.  I started taking Zyrtec and Zantac (both antihistamines) three days prior to hard chemo day.  This was supposed to suppress my allergic response prior to exposure to carbo.  Then on hard chemo day, they gave me the same premedications as always, which are two anti-nausea drugs and the steroid dexamethasone.  According to the literature, dexamethasone plus antihistamines can reduce adverse reactions to numerous cancer-fighting drugs.

In addition to these premeds, when it was time to administer the carbo the nurse prepared for the worst.  She set up the nebulizer, put more benadryl in her pocket, and prepared a dose of epinephrine.  I put away my knitting so that I wouldn't cause any obstructions should things go south.  Double down.  

She hung the back of carbo and hooked me up.  It only took 5 minutes for things to go south.  I started to feel a scratchiness in my throat, near the top of my lungs.  I started to cough a little bit.  That was all that the nurse would allow.

She unhooked the bag of carbo and started a bag of normal saline, presumably to help dilute the carbo in my system.  She went to get Dr. Oncologist.

Before their very eyes my symptoms diversified.  I could feel the heat spreading from my lungs to my inner ears.  They could see my ears get red, as well as my nose, chin, and entire chest.  The nurse pushed 25 mg of benadryl, and it immediately caused a metallic taste in my mouth.  Then she had me suck on a nebulizer of albuterol to make sure my lungs stayed open.  She also pushed another dose of dexamethasone.  Something about this--the allergic reaction or the additional meds, who knows--started to make me feel seriously nauseous.  The nurse handed me the tiniest puke bucket that I've ever seen.  I sincerely hoped I wouldn't puke, because I had just eaten lunch and was sure that this 1/2 quart bowl would be grossly insufficient.  Then she pushed another 25 mg dose of benadryl.

Everyone watched my allergic symptoms recede as the side-effects of benadryl kicked in.  I remember the nurse hooking me up to another bag of saline, but at some point I fell into a deep sleep.

Dr. Oncologist had me stay until almost 5pm so that she could keep an eye on me.  She also asked us to keep another grown-up on call on Friday night, just in case I had a second, delayed reaction and needed to go to the ER.  Then we went home.

I have not had any further carbo reactions, but I have taken a few doses of benadryl just to be sure.

Dr. O said that I'm done with carbo.  The nurse said that she would never give it to me anyway.  So this begs the question, what happens to the C in my TCH+P therapy?  Do we replace it with something else, or do we skip the C?  Although I am delighted by the short-term benefits of a protocol that lacks C, I fear the long-term cost of a potentially less effective cancer-fighting protocol.  Dr. O said that there are studies in which people are administered just the TH+P, no C, but these folks don't have evidence of metastatic disease (I do--"innumerable pulmonary nodules").  She didn't comment about alternatives to C, which we know exist, but Ian and I worry that we can't just throw in a C replacement and still be qualified for the P (remember, we are getting the P for free from the drug company, and it's possible that we have to follow their protocol precisely in order to remain eligible).  So...we're consulting with Dr. Medical Oncologist at my other medical center to see if she has any suggestions. We have three weeks to figure out a new game plan.

In the meantime, I'm hopeful that the lack of C will help me feel less weak, or less nauseous, or something better.  So far I feel the same as always on the day after chemo--heavy bones, fatigued, not terribly nauseous yet.

I have probably forgotten something, but this is all I can think of for now.  I appreciate all of the well-wishes!  We're halfway to the finish line!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

Overcoming adversity

I had a glorious week this week.  I felt better than I remember feeling on any good weeks the last time I went through chemotherapy.  There are too many variables that prevent me from figuring out precisely why this is, but I have ideas.  First of all, my kids are independent and understanding.  They are ages 4.75 and 6.5, and while this might seem young to most of you, I would like to point out that they were 1.25 and 3.0 the first time I started chemotherapy back in 2010.  They were mere babies who needed their mommy and couldn't comprehend my sickness.  I am sure that I attended to them before I attended to myself whenever I could.  In contrast, this time I am doing an excellent job of taking bona-fide naps, not just resting.  The kiddos are happy to play with all of the wonderful people who come over to play with them and are less dependent on me specifically.  It seems likely that this is contributing to my higher energy level after I get through the chemo fog.

A second variable of potential interest is that I now practice yoga and meditation.  I started taking a yoga class once per week in the fall of 2011 (after completing treatment for my first cancer, IBC), and I absolutely love it.  I now apply these skills almost daily to help me stretch my sore bones, ease my nausea, and heal my healthy cells.  It is empowering to close my eyes and imagine the hbomb diving within to achieve these things.

It is on this high note that I went in for my second dose of TCH+P yesterday.  Dad and Ian provided good company, and even treated me to a matinee (Ian Redboxed the Oscar-nominated movie Gravity for us to watch on the laptop--it was intense and visually stunning).  The 6 hours of treatment passed quickly until...I had an adverse reaction.

The last drug administered was the C, called carboplatin.  It is known that C can cause adverse reactions in people after several doses.  Some folks can develop an allergic reaction.  Each of the two times the nurse has started dripping the C into me, she has told me to tell her immediately if I start to feel strange.

Last week I couldn't tell if the C was making me feel any more strange than all of the other junk that was pumped into me during the previous 5 hours.  I assessed myself as "fine" and we proceeded with the C. I still think that everything was fine with last week's dose.

Yesterday, however, it became clear that the C was doing something strange.  At first I thought I was making things up, because I am fully aware of the research that shows that the power of suggesting side effects can actually cause people to feel side effects (this is called the nocebo effect ("I shall harm") and is the opposite of the placebo effect ("I shall please").  But check this out--I started sneezing and coughing, my nose started to run, my lungs got tight, my throat I started to burn, my ears started to burn, I coughed up mucus, and my skin turned red.  Ian agreed that we were past the realm of the power of suggestion.  We called the nurse.

She immediately paused the C drip.  We had 90% of the dose in my body, so I felt good that the cancer-fighting was not impeded.  A substitute Dr. Oncologist came in to check on me, too, and they came up with a plan.  The nurse started a benadryl drip to tell my body to stop this allergic reaction.  Another nurse came and set up an albuterol nebulizer treatment to get my lungs to open back up.  These counter-measures worked almost instantly.  It was rather remarkable.  I quit coughing, sneezing, and mucus-ing almost as quickly as I'd started.  I will say that benadryl administered intravenously is pretty hard-core.  The drowsiness was instantaneous.  I lost control of my eyelids.

Both the nurse and substitute Dr. Oncologist emphasized that we need to clearly enunciate to my usual Dr. Oncologist just how serious this episode was.  He asked me how many doses of C I'd received?  I said that this was my 8th dose (second dose of this battle, with six doses during my previous battle).  Substitute Dr. O said that the 8th dose is when these adverse reactions typically start.  He emphasized that this reaction was a warning to us, and that subsequent doses of C will illicit even stronger adverse reactions in me.  He told me not to worry, there are other cancer-fighting drugs that we can substitute for C, and we'll just have to talk with my usual Dr. Oncologist about the options.

I was thinking, I'm already taking three other cancer-fighting drugs.  I don't suppose we could just drop the C altogether?  Hint hint?  Wishful thinking, in a way, but I am also aware that I don't want to wimp out at this important time in my life.  Must fight the cancer, must fight the cancer.

After I had stabilized they started the C drip once again.  I guess we had to finish the dose after all.  The nurse stayed in the room the whole time and wouldn't let me get up to potty.  She had to make sure that my initial reaction was the worst of it.

And it was.  My body did not complain about receiving the last dregs of the C dose.  I bet my cancer complained, though.  He he he.

Today the family walked with me to the clinic to get my neulasta shot.  It's a glorious day out there.  As you might recall from last time, neulasta is a very expensive medicine that I receive one day after chemotherapy to help my white blood cells (specifically the neutrophils) rebound.  It's the best.

Finally, I'll leave you with an image to show you how I plan to get through the week.  I have acquired more weapons than I had during my previous hard week, and I have already begun to deploy them.

From left to right, back row:  A book of healing mandalas, mini saltine crackers, gatorade (exclusively lemon lime or orange, for the record), apple juice, and a new hat supply.  Front row:  homemade stained glass kaleidoscope, Kefir yogurt drink, Accuflora probiotic pills, Imodium, real ginger ale, and a new scarf supply.    

I anticipate a week of healing, beauty, and gut control.  Or if the gut control remains elusive, at least I can turn to the beauty for distraction.