Running with Bubbles

So if you read the article about me in the Dallas Morning News, you’ll know that my initial reaction to my diagnosis was anger.  You also might assume that I’ve spent most of my adult life angry, being a trial lawyer and all.  Well, I’m not angry about my diagnosis any more, and I never understood lawyers who were actually angry rather than just zealously advocating for their clients.  My clients are sometimes angry, but I’m just arguing a point.  I don’t think it’s healthy to take the job too personally.

 Me dressed as Anger.  Not actually angry.

Yet, the end of active cancer treatment means you have time for a lot of emotions to come to the surface.  There’s a little bit of PTSD involved.  Many people get depressed, or anxious, or cry for the first time.  Me?  I’m angry.  Angry in a way that surprises me.  Any enough to join a support group at my local Cancer Support Community and tell them with  sense of bewilderment, “I’m just so angry.”  (The other members of the group assured me I was perfectly normal.)

So if I’m not angry about having cancer, what is it about cancer that makes me angry these days? I’m so glad you asked.  In no particular order:

• Cancer ruined Halloween for me, at least for the last 2 years.  Last year I was waiting for the biopsy results and not in the mood; this year I was in the mood and had costumes picked out and then I got a fever at the last minute and had to miss all three parties to which we were invited.  Yay.  Third year’s a charm?
• Cancer ruined pink for me.  I love pink. If there’s a color choice and purple isn’t an option, I’ll choose pink every time.  But now every pink thing I buy feels like a statement about breast cancer.
• “Save the boobies” or “save the tatas.”  You know what?  I couldn’t save those.  But hopefully I managed to save my life instead.  Why is it only breast cancer that focuses on the body part and not the cancer?  No one talks about saving the livers, or the lungs.  You don’t see men marching around with signs to “save the balls.”
• That 30% recurrence rate that no one wants to talk about or hear about.  Ignoring it doesn’t make it go away.  Ignoring the women living with stage 4 cancer doesn’t make them go away, either.  (And unlike “Julie living with metastatic breast cancer” in the Ibrance commercial, most of them had to give up their careers to focus on their health and constant treatment.)
• The stupid Neulasta on-pro commercials.  Notice all of those people have their hair?  What’s up with that?  And why do they all live in huge, gorgeous houses?  Heck if I lived there I wouldn’t want to leave my house either.
• The lady who came to talk to my cancer transitions group (which I love) last week and said “Oh, I’m not supposed to call you cancer patients, I’m supposed to call you group members.”  WTF?  Are they hoping we’ll forget that we had or have cancer even though that’s the whole reason we’re there?
• My cast.  OK, that isn’t directly related to cancer, but I was just getting better from chemo neuropathy and radiation fatigue and the cast means I’m back to constantly dropping things and having trouble eating dinner without using my fingers.
• That fever I mentioned getting over the weekend?  No one knows why it happened. I have to call the oncologist if I have a fever over 100.5 (mine was 101.2) but then they were just like, “huh, weird.”  I know they’re not magicians, but it’s frustrating.
• And along those lines, people who are sent home to die because their oncologists, even at MD Anderson, have run out of ideas.  Not mad at the doctors, mad at the universe on that one I guess.

I’ll take all of the above?

• People who tell me I’m lucky that I got breast cancer because it is a “good” kind of cancer.   In some ways it is, but it’s cancer.  Not feeling super lucky.
• Still not feeling physically or mentally ok.  Apparently that may take another year (or even longer depending how the hormone blockers affect me).  Yay.
• Everyone assuming that I am 100% back to normal and feel fine because treatment is over.  I don’t know that I’ll ever be back to the normal I was before.  But I’m certainly not there now.
• The saying “your new normal.”  Yeah, it’s new.  It’s not fucking normal.
• (Sorry for the potential TMI on this one.)  Turns out cancer is really bad for your sex life.  Between surgery, no feeling in my breasts, chemo, radiation, immediate menopause, and now hormone blockers….
• People who insist that cancer patients or survivors or whatever always have a positive, sunny, grateful attitude.  Is this specific to breast cancer?  Because it’s annoying as hell.  It’s cancer, not a pink slumber party.
• People who insist that all cancer patients are warriors, or fighters, or whatever.  I chose the title badass for myself, but some people don’t want to be warriors, they just want to get healthy in a quiet way and not think of their current life as a constant struggle.
• Health insurance.  And I have a good policy, but who has time to fight over coverage of a wig or appeal the denial of payment to the anesthesiologist your doctor chose on your behalf?  Seriously, between this and the appointments, y’all, it takes SO MUCH TIME to have cancer.
• Doctors being too positive and hiding the true outcome/side effects/statistics.  I had to be clear with a couple of them that I wanted the truth, not what they thought I could handle hearing.  I’m an adult, don’t treat me like a child.
• People trying to sell me shit with faux science.  No, I’m not interested in Gerson therapy, homeopathic medicines, essential oils to cure cancer, or coffee enemas.  You do you.
• Cancer.
• Cancer.
• Cancer.

So, the plan ever since we found out that I was stage 3 (not stage 4, which would have taken away surgery, or stage 2, which might have taken away chemo) was for us to do four steps to get rid of the cancer and stop it from coming back:  1) surgery; 2) chemo; 3) radiation; and 4) Tamoxifen/Arimidex, which are two types of endocrine therapy —  drugs that prevent the cancer cells from binding to the estrogen in my body. I’m on Tamoxifen now because I’m still technically pre-menopausal despite chemo effectively throwing me into menopause; I’ll switch to Arimidex, the post-menopause version, after I have my ovaries removed next month, because it’s more effective for my type of cancer.

But right around the time I finished radiation I got a voice mail from my oncologist which I didn’t fully understand, something about a clinical trial and Ibrance and they were just opening a new protocol and she thought of me immediately.  I made an appointment to go in and see her, and it turns out that Eli Lilly had been working on a CDK 4/6 inhibitor to compete with Pfizer’s Ibrance (they run ads for Ibrance on TV, featuring “Julie who is living with metastatic breast cancer”).  US Oncology was participating in a brand new clinical trial for Eli Lilly’s similar drug, abemaciclib, but you had to have a certain type of cancer and be in a very particular place with treatment in terms of radiation and the endocrine therapy.  They wanted to compare recurrence rates between people who only took the endocrine therapy with people who did endocrine therapy and abemaciclib.

Not really my type of music, but I admire their style.

I just so happened to be in exactly the right place in my treatment, and hearing how excited my doctor was about the drug, (and after being assured I could drop out of the study if I received the trial drug but found out the side effects were too severe) I signed up right away.  I was the first patient signed up for the trial at my oncologist’s practice, and we later learned I was the first participant in the entire U.S.!  It’s not a blind study, but I had to wait over the Labor Day weekend before I could be randomized into one of the two study arms.  Luckily for me, I was chosen to take abemaciclib!  We successfully added a step 5 to our plan.  Take that, cancer!

So, how does it work?  Beats me.  Okay, so from what I understand, a CDK is a “cyclin-dependent kinase.”  CDK 4 and 6 are particulars types of CDKs.  A CDK tells your cells to keep dividing – usually in adults, most of your cells don’t need to reproduce so their reproduction is kind of “turned off.”  One of the things that happens in cancer is that the cancer cell’s reproduction switch gets stuck in the “on” position, and in breast cancer it’s CDK 4 and 6 that they think cause the switch to get stuck.  So by inhibiting these CDKs, any breast cancer cells hanging around won’t be signaled to reproduce and they’ll die off.    Now, interestingly, you do need your bone marrow to keep reproducing new blood cells and your digestive tract’s cells are constantly reproducing.  So one of the tricks is to make sure those cells don’t get turned off when they turn off the cancer cells.  (I have no idea how scientifically valid that explanation is, but that’s my understanding of how it works.)

This is a breast cancer cell dividing.  Looks pretty, is actually ugly.

When I started on abemaciclib it wasn’t yet FDA approved.  Last week it was approved for certain stage 4 patients and given a name – Verzenio, which I think sounds like something I might order at a tapas place or maybe a brand of wine.  They also gave it a price tag of over $10,000 a month (which is in line with both Ibrance and the other drug in this class, Kisqali, but is still pretty ridiculous, right?).  Luckily since I’m in a clinical trial I get it for free.

They told me I might have some fatigue and diarrhea from the medicine, but so far I haven’t had much of either.  Of course, there’s no way to test what it’s doing, but I’ll take it for 2 years and then they’ll compare recurrence rates at 5 and 10 years out, so we’ll see.  I’m just happy to have one more tool to use to fight the beast!

Let’s talk about you and me, let’s talk about all the good runs and the bad runs that may be….

Uh, sorry.  Having a nineties flashback for a minute there.  I’ve been meaning to write this post for a while but not sure what to say about my running this training season.  At the same time, I felt like I wanted to give an overview before I start doing more frequent posts about training and running and races (I mean, this is a running blog, supposedly.  Says so right there in the name.)

So most of you reading this know that I’m training for the Chicago marathon, and people are usually impressed when they find out that I trained during treatment — that I ran as soon as I was cleared after surgery and all through chemo and radiation.  I’m not going to lie, it’s been the hardest training season I think I’ve ever had.  There were days when all I could do was put one foot in front of the other.  I’ve pushed too hard and made myself sick (only once,  thankfully).  I’ve had to slow down.  I’ve had to walk on occasion.  I’ve been passed by walkers when I was “running.”  Some days, running in the morning means spending the rest of the day on the couch.

At a 5k we ran in May, the day after one of my chemo treatments.

And I know – I GET IT – that I’ve been through, you know, a pretty difficult year. I know that a double mastectomy is a pretty major surgery and that I still haven’t finished reconstructive surgeries (the tissue expanders can be pretty uncomfortable at times).  I know that I underwent cardiotoxic chemo.  I know that I had left-side chest radiation that most likely affected my heart and lungs.  But it’s still hard to work so, so, hard at something and not get any better at it.  It’s still hard to see how long it takes me to do a workout.  Today it took me 2 hours to run a mile, run 10 hill repeats of 1/5 of a mile each (and walk back down), and then run a mile home.  Last year that might have taken me an hour and a half.  When you’re looking at 5 miles total, a half hour is a big difference.

I promised myself when I got the email that I had gotten into Chicago that I would never miss a training run that I was physically capable of doing, and I would give myself about a 93% on that – solid A.  But I also promised myself, after we ran Goofy in 2015, that I’d never run another marathon unless I had gotten faster – my first 2 marathons were 7:05 and 7:03, respectively.  I worked really hard to get faster last year, and initially thought I’d have close to a 2 hour PR in this race, or a 5 hour finish.  Now?  Based on my latest training runs, it’s going to be closer to 8 hours.  And I’m honestly really pissed off about that.  The whole point was NOT to make people wait around on my slow ass to finish a race, not to be embarrassed to tell people my time, not to have long runs that took 5 or 6 hours to complete in training.

Will I get faster?  I assume so. I certainly hope so.  It’s only been two weeks since radiation ended, and although I don’t really know how or when the effects of all of this will go away, but it’s safe to say it probably takes more than 2 weeks.  On the other hand, will I get faster before Chicago? I doubt it.  It’s 38 days away and I need to taper down before I run it, so I don’t have much time left to actually improve.

After the Disney Paris half last September, where I got a 24 minute PR.  Will I get that fast again? Who knows?

I’m still going to run the marathon, of course.  I am capable of running Chicago, and we have our tickets and a place to stay, and tickets to see Hamilton and plan to see friends who live nearby.  I’m going to “just do it,” as Nike would say.  But I’m still coming to terms with the reality that I will probably not finish in the allotted time of 6:30 (my pared-down A goal) and I will probably not get a PR (my B goal).  Which means I’m settling for my C goal – to finish.  Honestly, I’m still working on being okay with that.  But I’ll get there. On race day, I’ll lace up my shoes and strap on my water belt and go out and toe the starting line and see what happens.  So far, that’s been a pretty successful strategy.

“Black and white soldiers alike wonder if this really means freedom.  Not. Yet.” – Hamilton

So, surgery, chemo, and radiation are all over.  And that means cancer treatment is over, right?  Sort of, but not really.  The day after radiation ended, I started taking Tamoxifen.  This is a pill given to pre-menopausal women to interfere with their estrogen receptors.  Because my cancer was estrogen-positive, I have to take a pill like this for at least 5 years to lower my risk of recurrence.  So far, no side effects, and I’m hopeful I won’t have any.  But for my particular type of cancer, the similar medicine given to post-menopausal women seems to work better.  For that reason, I’m going to have my ovaries removed in November.  Then I’ll officially be menopausal (unofficially, I’ve been in menopause since chemo started) and they can switch me to the other drug known as an aromatase inhibitor.  And in December, I’m having surgery to have my tissue expanders replaced with breast implants.  Hopefully that will be the end of the surgeries and then it will just be taking the pill and regular checkups and scans to be sure the cancer hasn’t returned.

Also because of the risk of recurrence, every weird thing that happens to me now has to be filtered through the “is this cancer?” lens.  This was made clear to me two weeks ago, right towards the end of radiation.  I hadn’t been feeling that well but decided to go out for my six mile run anyway and just take it slow.  Given that the heat index was over 100 degrees, that was a poor idea.  After I got home I started to feel much worse and ultimately ended up with a migraine and a lot of projectile vomiting.   I didn’t know if this was from radiation, or if I should be worried, so I called my oncologist’s nurse to ask.  I ended up going in for an appointment a couple of days later and being told to stay home and rest for a week, and there was at one point a plan for an MRI or CT scan of my brain to see if there was any cancer popping up there.  A little bit unnerving, but luckily I started feeling better so the scans are canceled for now – unless the symptoms return.

So it’s unpleasant to wonder if every little twinge is a tumor popping back up.  And it’s been a weird adjustment trying to remember what my life was like before all these appointments. It’s frustrating that I’m starting to get my energy back but not really feeling 100% yet.  I guess I thought everything would automatically go back to “normal,” but it’s not that simple. That’s probably why most cancer survivors talk about a “new normal.”  As my friend Carol T. said, “when you’re in the middle of a war, you don’t think about what peace looks like.”

“I like your tattoos,” the waitress said.  I was startled.  “I’m sorry?”  “Your tattoos,” she repeated, pointing to her neck.  “Oh.”  I self-consciously touched one of the stickers with the sharpie marks underneath it.  “They’re not tattoos, actually.  They’re marks for radiation – I’m having radiation.”

Some of my “tattoos.”

At the beginning of all of this, radiation was not something I spent a lot of time thinking about.  My surgeon told me right away that I’d need it.  My plastic surgeon was concerned about its effects on my skin.  But for me, surgery and chemo were the big dogs.  I’d worry about radiation later, after I’d recovered from major surgery and almost six months of strong anti-cancer drugs being dripped into my veins.

As it turned out, about halfway through chemo I realized that I needed to know when I’d be having radiation.  I wanted to plan some vacations, and I needed to let opposing counsel know when we could reschedule the trials that had been delayed since my November diagnosis.  Too, I heard about a new kind of radiation – proton therapy, which would cause less damage to the surrounding tissue.  It was unlikely that insurance would pay for proton therapy, but there was a center only 20 minutes from my house, so I decided to make an appointment to see if maybe I’d be an exception to that general rule.

Ultimately, I ended up meeting three radiologists – more than I did for any other of my therapies, which seemed odd given that I was the least concerned about this part.  First I met Dr. B, the radiologist my plastic surgeon preferred of the three at my cancer center; she’s the youngest and he thought she might be more protective of my skin.  Next, I went to the proton center where I learned that my insurance wouldn’t pay for that therapy (we tried, but they declined) because it cost more than twice as much as traditional radiation.  But, the proton doctor said, they were starting a clinical trial to compare proton and photon (traditional) radiation for cardiac effects on patients afterwards, and I was eligible for it.  If I joined the trial, I had a 50% chance of getting the proton therapy and a 50% chance of getting what I would get anyway, although I’d have to go to a different hospital than my current one.

I thought about it and talked to all of my doctors, and went and met the radiologist I would have been assigned if I joined the trial and didn’t get protons, and decided that the trial was a win-win.  Unfortunately, my insurance refused to pay for the clinical trial too!  (Wah-wah.)  So, it was back to my original hospital and Dr. B.  At the end of the day, I’m glad I tried for proton therapy, but I liked Dr. B the best of the three radiologists anyway and I liked that she was at the hospital with my other doctors (in fact, she remembered me from a tumor board session where the thinness of my skin was discussed).

Rocking the blue gown before today’s session.

Dr. B and I agreed that in order of importance, my goals are: 1) no cancer recurrence; 2) no heart issues from the radiation, and 3) the ability to complete my reconstructive surgery.  With luck, I’ll be able to get all three. I’ve been both lucky and unlucky at times so far with this whole cancer thing, so we’ll see.

So far, I’ve had 6 of 28 sessions.  It only takes about 15 minutes and you can’t feel it.  The only side effects so far are a feeling like I have a lump in my throat and a bit of reflux (from a lymph node by my clavicle that requires radiating, causing a bit of the radiation to graze my throat), but I can expect skin side effects at the least like being sunburned (possibly pretty badly) and increased fatigue.  Still, it’s a little weird to be alone in a room with a 12 inch door due to the high levels of radiation while a machine silently whirs around you.  After the social experience of chemo which included my husband and at least one friend per day, plus chatting with nurses and other patients, this feels kind of lonely. A couple of times I find myself lying there with unexplained tears in my eyes.

The machine that has failed (thus far) to provide superpowers.

Still, radiation is the last step in what I think of as “active treatment.”  (I need at least 2 more surgeries and will be on hormone suppressing drugs for 10 years at least, but I won’t be at the hospital on such a regular basis and I should be able to get back to my regular work schedule instead of feeling like I’m out of the office half the time.)

Normally, they wait four weeks after chemo is over to start radiation, to make sure the majority of the drugs are out of your system.  But my blood counts were so good at the end of chemo that at my request (due to work and the Chicago marathon in October) they started my radiation two weeks early.  That means if all goes well I’ll be done in mid-August and by my birthday we can celebrate that we made it through the big three of surgery, chemotherapy, and radiation!  With that in mind, I can’t wait to turn 48!

I can’t sleep.

In and of itself, this isn’t really surprising.  Insomnia is a side effect of chemo, along with night sweats, for which my oncologist prescribed Gabapentin.  The Gabapentin is supposed to make me sleepy, too, but it doesn’t.

Honestly, sleeping has never been my strong suit. The first time someone commented on my lack of sleeping was a professor during my summer abroad in college who noticed I was always prowling around the dorms where we stayed in England.  He theorized that I had something on my mind.  Well, yeah.  I always do. I remember lying awake as a kid in Detroit wondering how we’d all get out of our second story bedrooms if there was a fire.  After a while of thinking about this, I’d inevitably conclude that my dad would figure it out (hypothetical thanks to my Dad!).  Other times, I’d get annoyed that I could never remember falling asleep and try to stay awake so I could see what it felt like to fall asleep (I don’t know how to explain that one. I was a weird kid.)

In law school and for most of my 20s, I slept 4 hours every night. It worked well with studying and then big-firm associate hours combined with keeping up an active social life.  It probably wasn’t until 10 or 12 years ago that I started reading things about how important it was to sleep, how lack of sleep led to obesity and other health issues.  I started trying to sleep more to help me lose weight, honestly, but it was easier said than done.  Then I hit 40, and I think there’s a hormone shift somewhere around there, because I noticed a lot of my female friends started complaining about not being able to sleep, either.

I call this the “sleepy blanket.”  A gift from my sister, it’s a great weight for napping.

Over the years I’ve tried various things.  I don’t like to rely on pills but I’ve tried warm baths, warm milk, melatonin, tryptophan, and yes the occasional Advil PM, muscle relaxer or anti-anxiety med when it’s really bad and the other option is staying awake all night.  I have great sleep hygiene (if I do say so myself). I’m plenty tired.  I just…don’t sleep.  This problem has escalated again since my diagnosis.

The reason this is bothering me now is because of the things I think about at night.  It used to be random thoughts about the world, or something I read, or how far I needed to run the next day, or whether or not I missed a deadline in a case.  Since I was diagnosed, my thoughts are more emotional and a lot of nights I find myself wide awake with tears streaming down my face.  Some of these thoughts are as you’d expect – is the cancer really gone, will it come back, will the side effects of treatment cause problems down the road, is this going to kill me?  Some of them are about the kindness of other people, my doctors, my family, my friends.  The other night I found myself mourning Grim and Milo, my cats that died nine years ago.  There’s no one to talk to at night and even if there was, I wouldn’t know what to say or how to explain it, or how they could help.

The insomnia seems to be worse the night before chemo. I’m no longer anxious about the chemo itself, it doesn’t hurt (other than the cold caps) and it’s actually kind of a pleasant environment. Plus, I get to spend time with Tony and usually a friend too.  But going to chemo reminds me that this is serious, that even after they cut the cancer out they’re so worried about it coming back one day that I need 16 rounds of really strong chemotherapy and then 28 rounds of radiation.  The other week at chemo I met a woman who is going through treatment for breast cancer for the third time. It’s anecdotal, I know.  But it strikes me that no one can promise me this is going to work or that if it does work, it will work forever.  And what’s worse is that I can’t control any of it (most people who know me would agree that control is probably my biggest issue here).

Last week the PA at my oncologist’s office suggested I try a Lorazepam with the Gabapentin, “unless you think that would be too much?” she asked.  I looked at her blankly and explained, “last night I took a Gabapentin and 10 mg of Valium, and I was awake until 1 a.m. and woke up at 5.”  “Oh,” she said.

I think the best thing about running (or working out with my trainer) in the morning, including the mornings of chemo, is that it clears away the night.  Even if it’s dark when I set out, by the time I come home the sun is up and the cobwebs of the night are swept away by the light and by the pounding of my heart and the sweat dripping from my forehead. Like the monsters under the bed of a child, during the day my fear is gone and my thoughts are mostly positive.

Sunrise over White Rock lake in Dallas, where I frequently run on the weekends.

It’s only knowing the morning is coming that gets me through the longest nights.

So, now that the tests had been done and the second opinion obtained, it was time to start the part I dreaded the most – chemotherapy.  In particular, my chemo regimen would include four rounds of Adriamycin and Cytoxan on a “dose dense” schedule, once every two weeks.  We agreed to do that on Thursday so that I could take off Fridays and hopefully feel well enough to be back at work by Monday.  After that, I’d have 12 rounds of Taxol, which Dr. J said should be easier.  I would have those every week. We ultimately decided to do the taxol rounds on Friday since I shouldn’t need the extra day off and by then, I was feeling like I was gone from the office more than I wanted to be and my cases were starting to suffer.

I was terrified of chemo.  Surgery?  No big deal, I’ve had lots of surgeries.  But chemo brought to mind (in addition to the baldness) images of people who felt terrible, who were sick and vomiting all the time, who had fevers, were in and out of the hospital – it sounded awful.  The “chemo class” they made me go to didn’t help as they talked about all the worst side effects we might expect.  Everyone’s different, and there are lots of different chemo cocktails, so the class kind of had to cover everything I guess.  They also wanted me to fill out a form on my wishes in end of life scenarios, which I firmly declined to do.  (The teacher of the class also told us it was “interesting” that she had started out teaching classes for new parents-to-be in the birthing center, and now she had kind of come “full circle” by leading these chemo classes.  Not super reassuring – were they planning to kill us?)

Luckily Tony and I had theater tickets the night before the first infusion, and I took a valium to try to get some sleep.  I had already had a port placed near my clavicle about a week earlier to make it easier for them to access my veins.  When you go in for chemo, first they send you to the lab to have blood drawn to check your levels and make sure you’re healthy enough to actually get chemo (basically you have to be in good enough shape to get beat up again). Then you (usually) see the doctor or PA who reviews the results with you, then you actually go back to the chemo suite where they assign you a nurse and get you all set up. First you get premeds – anti-nausea stuff, steroids, and Ativan, and with the Taxol they also add Benadryl because it has a high rate of allergic reactions.  Then they actually start the chemo part.  The Adriamycin was the worst because it’s really heavy and they have to push it in through two syringes.  The Cytoxan and Taxol are both dripped through a regular IV bag.

This is Ardriamycin, commonly called the “red devil” or even “red death.”  I didn’t like that imagery, so Tony and I decided to refer to it as “tiger’s blood.”  Yep, me and Charlie Sheen, running on the same cocktail.

Apparently some people sleep through chemo.  For me, the steroids kept me too wired and the Ativan didn’t really effect me that much.  Even with the addition of Benadryl, I never fall asleep until we’re home after.  The truth is that chemo itself isn’t so bad – I can’t really feel it except for when they have to fuss around with the needle too much trying to hit the port.  I chewed ice during the Adriamycin to help prevent mouth sores upon their suggestion. Honestly, they have so many medicines now to help with side effects that it is for the most part very well controlled.  In fact Dr. J told me that most of her patients gain 10-15 pounds during chemo – I’ve avoided gaining any more so far, but I’m still 10 pounds above my pre-surgery weight.  The steroids make you hungry and the nausea means you eat a lot of carbs. I’m okay with maintaining for right now, but I’m working pretty hard to do that.

As I mentioned, the first part of the regimen (the A/C) was said to be tougher for most people, and so far that’s true for me (although I am only through 2 of the 12 taxol, and they’re cumulative, so we’ll see.). Still, even on the A/C I was able to control the nausea pretty well and was even able to run through most of it.  I did develop a fever after the last A/C and missed three days of work and a week of running.  Tony and I decided on a quick trip to hill country (Wimberley) to celebrate making it through the first section, which was a great break and gave me the energy to face 12 more sessions when we got back (the sheer number of these is still daunting).

My biggest side effects from chemo so far have been nausea (but very little actual vomiting), fatigue (which is tough because the steroids make it hard to sleep), night sweats (terrible), and a sore spot on my tongue like I burned it on something, which comes and goes. I drink way more than a gallon of water a day, which I think helps a lot, as well as exercising as much as I’ve been able to.  No mouth sores, no major stomach issues, no low blood counts delaying anything, no infections.  I do have some brain fog/chemo brain – writing doesn’t come as easily and quickly as it always has, which is frustrating, and sometimes I can’t think of a word (usually it’s more a loss of a phrase like “she has an ax to grind” or “don’t cut off your nose to spite your face.”  Maybe I should just quit saying stuff like that.)

As part of the initial talk about chemo, Dr. J mentioned that there was a sort-of new thing called cold capping that could prevent hair loss from chemo.  But, she said, it wouldn’t work for the chemo she was recommending for me because it included the “tiger blood” Adriamycin, which was too hard on the hair follicles. As most of you know, we did end up doing cold capping to try to keep my hair, but that deserves a post of its own – after which I hope to be able to post here in real time rather than about things that happened months ago! So next up is cold capping – what and why and how?

I was pretty out of it immediately after surgery, but I had a lot of visitors to cheer me up.  Mostly that first day I remember being hot and annoyed and in pain and unable to sleep.  I had those things on my legs that keep your blood circulating, but it was like sleeping with water wings on your lower legs. I kept making everyone turn down the temperature in the room.  Donna Sue was my last visitor of the day and turned it down to 60 but every nurse that came in tucked my feet back under the blankets. I was also on oxygen because I still had the epidural in.  The epidural was supposed to control the pain, so even though I kept telling the night nurse my pain levels were at 8, she just circled that on the wall board and went about her rounds.  When the anesthesiologist came in the next day, he told me that he had prescribed Percocet for breakthrough pain as well as Valium and Phenergan (pain pills make me sick).  Not sure why the night nurse didn’t tell me that, but I made sure I got my pills after that.  When they finally came in and took out the epidural and oxygen and let me get up, the nurse was surprised that I reorganized the room and changed into my pajamas by the time she had the bed re-made.

My doctors came in to see me that day too.  First was Dr. T, who marveled at how good I looked (I think it was the tiger print pajamas).  She gave me the good news that all of the additional (14) lymph nodes she removed were non-cancerous.  YAY!  This meant that I might not need chemo after all.

She also mentioned something about how surprised and happy Dr. K would be, but I didn’t think too much of it until he came in later.  He wasn’t smiling as much as he normally does until he unwrapped the bandages and took a look.  It was only then he told me that he was prepared to call his assistant and tell her they would need to book me for another surgery before Christmas because my skin was so much thinner than he expected.  He said he even briefly wondered if Dr. T had ended up deviating from their planned incision (she didn’t, my skin just retracted a lot apparently).  He had put in the tissue expanders as planned but didn’t add any saline to the left side because he was so worried.  But apparently my skin is very stretchy (I could have told him that) and it looked fine, so he was no longer worried about necrosis.  I was glad he told me all of this after the fact!  Surgery was Monday and I was released from the hospital Wednesday afternoon. I’ve had a lot of surgeries, including ones with a six week recovery period, but I think this was even worse than my tummy tuck.  I couldn’t concentrate on a movie or tv show (I had to re-watch Westworld a month ago).  I couldn’t read.  I colored a lot, and slept, and made sure I took a walk every day even if some days I went out in my pajamas and a coat.  The pain pills helped, but even with the anti-nausea pills I frequently vomited from taking them.

It was helpful that my surgery was December 12 because my cases were pretty slow due to the holidays.  But after the first of the year I started needing to take calls from work to help the colleagues covering my cases.  And even though these calls weren’t very frequent or very long, I quickly realized that working made me sicker than any physical activity did.  Tony and I finally decided that must have been because I could slow down my body but I’ve never been able to slow down my brain.

After six weeks, I went back to work half-days for a week and then full-time.  But during the time I was home I had a million doctor’s appointments, of course, including one with Dr. J who immediately told me I would, in fact, need chemo and she recommended the more aggressive regimen (which is also longer) due to my age.  I’m not very proud of this, but I started crying in her office.  I just wanted cancer to be over and done with.  I didn’t want to be sick and tired. I didn’t want to lose my hair, which she told me was inevitable (more on this in a separate post).  But most of all, I kept hearing about chemo brain and how it could make you forgetful and make it hard to find the words you needed.  Obviously in my career that’s a scary proposition, and I was already feeling muddled.

So, seeing my hesitation,  Dr. J decided to order an Oncotype test, which tells you how responsive your particular cancer will be to chemotherapy.  Because I was stage 3, chemo was standard because even with one lymph node my risk of recurrence was too high without it.  But as she said, if the chemo wasn’t going to do any good, there wasn’t any point putting me through it.  I think Dr. J thought I was going to refuse chemo, which was never my intention, but I did seek a second opinion.  The second doctor (who talks faster than I do) was extremely straight forward and told me she wouldn’t even have ordered the Oncotype testing, because I needed chemo (although she thought the shorter version would have worked just as well.  I eventually figured out there was only a 4 week difference between the two, so went with Dr. J’s recommendation).  She was very clear that the risk of the cancer coming back was way higher than the risk of adverse effects from chemo (which also include, very rarely, heart damage or leukemia).

When the Oncotype test came back, Dr. J (and I) were glad she did order it, because it showed two things – one, my cancer was not as highly estrogen positive as most lobular cancers are, so we couldn’t rely on hormone suppression alone to keep it at bay.  Second, it showed that my cancer was highly responsive to chemo, and that doing it would take my risk of recurrence to single digits.  She said “I know this isn’t what you wanted to hear,” and I surprised her by saying “no, that’s fantastic news!”  The last thing I wanted to hear was that the cancer would probably come back but chemo wouldn’t reduce my risk at all.  So, we scheduled chemotherapy to start on February 9.  I would have four rounds of AC (adriamycin and cytoxin) and then 12 rounds of taxol.  Meanwhile, Tony and I went on a quick trip to Keystone not knowing when I’d be up to traveling again.  I wasn’t cleared to ski, of course, so I just hung out and went to the spa.  Between running away to Austin right before we got the diagnosis and this trip, it seemed we were developing a pattern of travel to mark the different stages of my treatment.

Next up – the scariest part so far – chemo.