The Long(er) Road to Recovery

“The secret of life, though, is to fall seven times and to get up eight times.” — Paulo Coelho, “The Alchemist”

I know it has been awhile since I did a new blog post on how things are going.  I am sorry it has taken me so long to let you all know what is happening.  It has been a busy several weeks with some twists and turns along the way. 

Last Round of Chemo:

Let me start with the more mundane (compared to everything else).  My last round of chemo was very similar to my 4^th and 5^th rounds of chemo.  I felt terrible for several days and then it just turned into feeling very tired and crappy for the rest of the time.  Six rounds of the TCHP treatment got progressively harder as the effects on my body became cumulatively worse.  I was lucky in that my side effects never got so bad as to delay treatment and my blood count (white blood cells, etc.) – while low – kept within the parameters in which treatment could proceed. But, at the end, I was anemic and very, very tired.  I had a lot of trouble eating and my digestive system was pretty messed up. I felt like I had forgotten what it was like to eat a meal without it tasting terrible or resulting in extreme discomfort.  Of course, my hair was long gone, but then my fingernails and toenails also started to lift and separate.  You never realize how much you depend on your fingernails until they start to hurt, bleed, pull up from the nail bed, and separate.  I must soak my hands and feet in Epsom salts every night and wear gloves for cooking and washing to keep them from getting infected.  And, do not get me started on how they look.  Let us just say . . . pretty yucky.  Unfortunately, this side effect will not be fully resolved until new nails start to grow in . . . which is probably six months for my hands and up to a year for my feet.  I also started to suffer from neuropathy around round 4 and it got worse with each round.  That fun side effect is when your fingers and toes start to go numb or feel like pins and needles.  Essentially, the chemo drugs are attacking the nerves in your hands and feet. I am nearly five weeks from my last chemo round and the neuropathy is starting to fade, but I still have numb spots on the tips of my fingers and on part of the bottoms of my feet.  It kind of feels like part of my feet are wearing slippers when they are not.  My last side effect is also starting to subside – thank goodness.  That side effect is nearly continuous weeping of my eyes.  It is annoying, but it is also painful because it is like my eyes are constantly weeping salty tears and if you have your skin exposed to that salty water for weeks, the skin starts to get red and raw. 

Just as I was emerging from the fog of round 6, I went into the hospital for my mastectomy.  I was not all that nervous about the surgery.  I was more nervous about what they might find.  I started my surgery day with a date with radiology at 8 AM.  The thing about doing your treatment and surgery at UC Davis is that it is a teaching hospital, so you need to be prepared for not just your doctor but also a whole entourage of residents and students for many procedures.  I do not care about that.  In fact, I am happy to be the guinea pig so that these newbie doctors can learn and become great doctors.  At this point in my treatment, I have lost any concerns about people seeing me naked, seeing me sick, or seeing me vulnerable.  You kind of lose all that when you are more focused on just getting better. 

The Surgery:

So, let me tell you about my radiology appointment because it is kind of an amusing story.  I am in radiology so they can inject blue dye and radioactive tracers into me so that when the surgeon opens me up, he can find the right lymph node – known as the sentinel lymph node – to determine if my cancer has metastasized beyond my breast.  I am lying on my back on a narrow table in front of a big coffin-like scanning machine when my radiologist and his entourage show up.  He was a nice guy and spent more than five minutes giving me the most detailed explanation of what they were going to do to me and why, which I appreciated and told him as much.  He informed me that they were going to inject tracing material into my areola and then take some pictures in the scanner.  He then handed over the big needle to the resident, who it turned out had NEVER done this procedure before.  At this point, I was thinking – what the fuck, they are about to cut off my breasts in a couple of hours, I think I can handle a newbie injecting stuff into my nipple area.  Seriously, these are the things you think about.  I am lying there as Doogie Howser is being guided by the radiologist for the procedure – I am not looking, mind you – but I am listening to the instructions.  It went like this: “Ok, Doogie, place the needle at an angle. No, more an angle. Inject slowly . . . no . . . slower . . . I said slower. . . that is good . . . now keep going . . . I said slower . . . no slower.” Let me interrupt this narration to just assure you that I had already been numbed in the injection site so I was not feeling any pain.  In fact, I found the entire situation funny because obviously this resident did not want to screw this up and was doing his very best in front of an audience and me.  After he completed the injection of the dye, he had to go back to inject the radioactive material. I find the use of radioactive material also to be amusing because they are so careful in protecting everyone else and themselves from being exposed to the very thing they are shooting into my body.  I mean, the stuff shows up in these cement-like cylinders . . . kind of like what you see nuclear waste stored in . . . but then they just shoot it into my bloodstream.  After the resident completed his task – successfully – he was congratulated by the radiologist.  I almost felt like high fiving him, but thought maybe that was a little over the top.  Instead, I congratulated him on a job well done.  The doctor entourage thought that was funny.  I was happy to give them a laugh early in the morning.  I did not have anything else to do that day. 

After getting injected with the tracing material and getting scanned in the coffin scanner, I headed up to surgery with Chris.  They dropped him off into the waiting room and brought me into the pre-op.  I got into my nifty surgery clothes and got hooked up to the IV and then had a parade of doctors and residents check me out for the next hour or so. I also was informed of the various terrible things that could befall me while in surgery so that I could sign various forms absolving the doctors and hospital of liability (sort of).  If that rundown does not freak you out, I do not know what will.  My plastic surgeon showed up and took more pictures of me.  That was fun.  I had to get up and disrobe the top of part of me for several pictures in front of a blue screen at various angles. We also then had another conversation about whether I needed to have anti-coagulant medication after the surgery due to a possibility of blood clots. We decided that I should have the medication. At that point, Dr. Wong said: “OK, so you are good with giving yourself injections into your abdomen every day for a week?”  My response: “Uh, no. I am not giving myself injections, but you can tell Chris to do it.”  See, I am such a giver.  Not only does Chris get the joy of managing my JP Drains – more on that later – but he gets to give me shots every night.  I am the gift that just keeps on giving. 

My surgery went well – not that I remember any of it.  After about 4 hours, I was rolled into post-op. I was in and out of consciousness for a while.  I think my doctors talked to me, but it is very blurry.  Apparently, when Chris was finally allowed to see me, the first thing I asked him was how the hearing went on AB 3030, the bill I have been working on since January. According to Chris, he figured I had to be doing OK if I was already obsessing about that bill.  What I do remember is that I was very sleepy, and my chest felt very tight as if a band of iron had been wrapped around it. 

I only spent one night in the hospital.  I was determined to get out of there.  I harassed my night nurse so that I could talk a walk around the hospital floor before I went to sleep that night.  I wanted to make sure that I checked all the boxes to get discharged.  My brief stay in the hospital was interesting. There was a guy on our floor who screamed out every hour. I do not know what was going on with him, but he was very agitated and very consistent in his hourly outbursts.  For a while I thought I might have a room to myself, but around 9 PM, I got my roommate.  I felt bad for her.  She had been in bad motorcycle accident and was in a lot of pain.  Needless to say, between the screamer down the hall and my poor roommate moaning, I did not get a lot of sleep. 

After another walk around the hospital floor in the early morning, the visits with the various entourages of doctors to check out my incisions and the nifty “pain balls” – my words – that had been installed into my body to control the pain, I was released mid-day to go home.  A word on the “pain balls.”  I opted for something called “One-Q” pain pumps, which are softball sized balls of pain medication that are “wired” – really using thin tubes – into my body near the incisions.  The One-Q pain pumps pump out medication over five days into the area that had surgery in order to reduce the need to rely on opioid medication.  These pain pumps are relatively new, so the surgical residents were pretty interested in them when they came by.  Some of them had never seen them before.  Between the two tubes pumping medication into my body and the four JP drains that were draining fluid out of the incision sites, one of my doctors joked around that I was an octopus. Ha. Ha.

Coming Home:

I arrived home hurting some, feeling pretty beat up and tired.  Chris and kids moved an old Barcalounger up into our bedroom so I could sleep sitting up.  I took a pain pill and went to sleep for a couple of hours.  I did manage to pull myself together later in the day to call into a meeting on AB 3030.  I needed to think about something other than myself and this bill has become very important to me.  With all of the shitty things that have happened this year, I have one bill that, if passed, would make California the first state to adopt a goal of protecting 30 percent of our lands and waters for biodiversity and a goal of increasing access to nature for disadvantaged communities. I came up with the idea for this bill in January when I was in DC for a meeting on other issues.  I had been reading up a lot of the global and national push for this “30 by 30” policy and thought that California would be a perfect place to launch this at a state level in light of how much we have conserved and how diverse and imperiled our own biodiversity is right now.  I would feel like this year was not so much of a shit-show for me if I could achieve one positive outcome – the passage of this bill. 

The next several days were kind of a blur of resting, working, and not feeling great.  With the six tubes coming out of my body along with the 14 inches of sewed up incisions over my chest and former location of my breasts and the fact that I could hardly move my arms because of the surgery (and my bald head, disgusting nails, and weepy eyes), I really felt like some kind of Frankenstein.  To top it off, I had an allergic reaction to the antibiotics that caused my entire torso to erupt into a very red, angry, and itchy rash and triggered some breathing issues in which I was wheezing for days.  After several days, the doctors figured out that I had an allergic reaction and stopped the antibiotics.  Thank goodness. I will be honest, that was not an easy week.  I cried a couple of times because I felt so bad and looked so horrific.  All I wanted was to go back to being my old self and being healthy.  I never felt like I looked or felt so unlike ME.  I hated to look at myself.  I hated how I was feeling.  I felt so very, very out of control.  Honestly, there are moments when I wonder if I will ever feel good again or look like my old self again.  Has that moment in my life left?  Am I always going to feel so DAMAGED?

Fortunately, within a week of my surgery I was able to get four of the six tubes taken of my body.  The pain pumps got removed on the Wednesday after my surgery and two of the four JP drains got removed one day later.  According to my plastic surgeon, the healing is looking good. 

Through all of this, Chris has been a champ.  Not only did he get stuck with a sick wife these last few months, he got the extra bonus after I got home from surgery to have to take care of me – giving me shots in my stomach and “stripping” my drains.  Oh yes, drains.  You don’t hear much about this, but after this kind of surgery, they have plastic tubes coming out of your armpits that are draining away the “fluid” build up from the site in which they took away the breast.  The body is not too happy about losing a part of it.  These tubes end in plastic containers that collect the “fluid.”  This whole set up is called “JP Drains.”  Three times a day, Chris has to “strip” the plastic tubes – force the fluid down the tubes into the containers – and then pour out the fluid into containers to measure how much fluid is coming out of me.  We must record all of this and total it up daily.  Yes, it is a fun as you imagine (NOT).  All of this is important to make sure that you are healing up, but I have to say that I will be thrilled when the last two JP Drains come out hopefully later this week.  It is a pain in the neck to have tubes coming out of your armpits and to have to carry around these drains in what is like a little purse.  People look at you walking down the street with tubes coming out of your clothes, wondering what the heck is going on with that person.  Like I said, I cannot wait for these drains to get out of my body.

The Pathology Report:

Weighing on my mind after my surgery was the unknown of the pathology report.  I wanted to know if the chemo had done what it was supposed to have done:  Was all the cancer gone – or in clinical terms: did I have a Pathological Complete Response (PCR)?  If I did, I would no longer have any chemo and only must complete my remaining immunotherapy rounds through March 2021. 

Let me cut to chase: I did not have a PCR.

Now, you are probably sitting there thinking: Shit. That sucks for Kim.    

I will not lie that my first reaction to my results was anger and frustration.  I cried.  I tried to throw stuff, but that effort was rather limited given the 14 inches of sewed up chest area.  I swore. I yelled.  I had a proper temper tantrum that lasted probably about 20 minutes.  But then, as I was laying in my bed, wiping tears out of my eyes rather angrily and fuming that I could not even throw stuff with my gimpy chest, I started to think about what my results really revealed. 

The pathology report showed that I had no cancer in my lymph nodes.  Not a speck.  So, my cancer never metastasized. I was officially Stage 1.  The cancer that was left over from the chemo remained in my chest in teeny-tiny specks near where the tumor had been.  So, the chemo had worked. It just did not kill every single cell.  Plus, with the double mastectomy, the remaining tiny specks of cells left over had been removed from my body.  I was — for all intents and purposes — cancer-free.  THAT was something to celebrate.  THAT was a win.  THAT was NOT something to moan and groan about. 

I realized that I needed to change my perspective.  I needed to celebrate that I AM NOW CANCER FREE.  My next steps on my treatment are all about minimizing the chances of me getting cancer again. 

So, yes, I do have to undergo a “chemo-lite” form of treatment.  And, yes, that treatment has side effects and will make me immunocompromised.  And, yes, that treatment will last for 10 months. 

But the fact remains: after 6 rounds of chemo and surgery, I do not have any more cancer in my body.  WOO HOO!!

I got off that bed with a different outlook and I feel a lot better about that pathology report.  Sometimes life does not unfold exactly how you want.  You can dwell on the negative or you can look at what you should be grateful for.  I can tell you that I felt a lot better when I changed how I looked at my results.  I am not looking at myself as being sick.  That is over and done with.  Moving forward, I am all about being WELL.  This next phase is about me getting healthy, recovering from my surgery, and getting my chest back in order with my new fake boobs, and doing my damnest to make sure that I NEVER HAVE TO GO THROUGH THIS AGAIN. 

The Next Phase

When you are in my boat and do not have a PCR after chemo, you have a choice:  you could continue with the immunotherapy as planned or you can go through a treatment called T-DM1 (or Kadclyca).  If you choose to go the immunotherapy route, you get infusions of Herceptin and Perjeta every three weeks with minimal side effects.  I know because I did one round of the Herceptin and Perjeta last week before I got my results.  It was a breeze.  If I went that route, my odds of getting a reoccurrence of cancer within three years would be around 23%.  If I chose the T-DM1 route, my odds of getting a reoccurrence of cancer within three years is 12%. I have decided that I am doing whatever I need to do to reduce my odds of getting cancer again.

T-DM1 treatment is kind of an interesting treatment.  It is a combination of Herceptin and the chemotherapy medicine emtansine. My breast cancer makes too many copies of the HER2 gene. The HER2 gene makes a protein known as a HER2 receptor. HER2 receptors are like ears, or antennae, on the surface of all cells. These HER2 receptors receive signals that stimulate the cell to grow and multiply. But breast cancer cells with too many HER2 receptors can pick up too many growth signals and start growing and multiplying too much and too fast. Herceptin seeks out the HER2 receptors and blocks the growth signals.  Meanwhile, Herceptin then carries emtansine to the HER2-positive cancer cells. It is far more precise and targeted than when I was being infused with the Taxotere and Carboplatin that has those drugs nuking not only the cancer, but all my fast-growing cells. 

While the Kadclyca (or T-DM1) is a known as a kind of “chemo-lite,” it still has side effects, and everyone seems react to it differently.  Who knows how I will feel?  The most common side effects are fatigue, neuropathy, and liver problems.  I feel like one of those drug ads on TV – “Take this great drug and it will cure you.  But, just know that you might have all these other side effects.”  My new plan of attack is to take really good care of myself – exercise, eat right and sleep.  If I do that, then I might limit my side effects.  I am also researching the use of CBD products as they may help stave off the worst effects of the neuropathy – which I am already experiencing from the TCHP. 

I am not thrilled about the potential side effects, but I am probably even less thrilled that this treatment is supposed to last 14 rounds (every 3 weeks) or, if my math is right, 42 weeks.  This seems like forever.  I do not think that I would be as bummed if this were a normal time, but this treatment does leave me immunocompromised.  So, until we get a COVID-19 vaccine, I am stuck at home AGAIN.  But, then again, most of us probably are stuck at home until a vaccine is finalized and distributed. 

At the end of the day, I feel like the tradeoffs of going through this new treatment plan is still worth it.  I will take the extra 11% chance of no reoccurrence of cancer that I get with doing this treatment.  We will see how it goes. 

Oh – I also forgot – since my cancer was TRIPLE POSITIVE – meaning that I not only was HER2 positive, I was also Hormone Receptor positive — I also get the joy of taking a hormone suppressor drug.  Depending on whether I am menopausal or post-menopausal, I will have to take either Tamoxifen or Aromatase inhibitors (AIs) for the next 5 years.  I will go into the fun side effects of these drugs when I find out which one, I get the joy of taking.  For someone who hardly ever took Advil, I am turning into a damn pharmacy. 

Wrapping it up:

I know that this has been a super long post, but I had a lot to talk about.  I have not really gone into the next steps of recovery with my mastectomy and reconstruction.  I see my plastic surgeon again this week and next week so I can fill you in on all my next steps with that.  I will also know more about when my next round of infusion with the new drugs will be happening.  I don’t know right now because I am waiting on my insurance company to approve this new treatment – don’t get me started on how much I hate having to bird-dog my insurance company and how I feel like my health depends on whether some bean counter decides whether the numbers add up to allow me to get life-saving treatment (yes, we need Universal Healthcare as our system is BROKEN). 

These last few weeks has been a roller coaster for me.  I have probably experienced some of my saddest and most helpless moments, my most angry and frustrated, and my most grateful.  I do not think that I could say that I have experienced my happiest moments during this time. That would be a lie.  I am happy, but it is a subdued happy.  I am thrilled to be cancer-free.  I am thrilled to have the worst chemo and the surgery behind me.  But I would be a liar if I said that I did not still feel like I have emerged from this fight a little battered, a little bloody, and really tired.  These months have been hard.  I have been lucky to have so much support.  But, in the end, this fight is really one that can be a little lonely no matter how many of your friends are there for you and how much your family stands with you.  Late at night, when everyone is asleep and you are lying awake feeling crappy, you stare into your own mortality and your fears. 

It is in these moments when I have found myself most alone that I have also learned the most about myself.  As someone told me, you must let yourself experience all your feelings – the good and the bad – to be able to move forward.  It is in these moments when you are alone when you feel the full brunt of these feelings.  I have looked at them – rolling through them in my mind – and then I have moved past them to be able to heal.  I have found strength in myself that I did not know existed.  I would not wish what I have experienced on anyone, but I would say that I think I have found a better version of myself emerging from this experience. 

So, moving forward, I am grateful that I have emerged battered but better. The next step is learning to live my new “cancer-free” life . . . .