Thursday, June 8, 2017

Hair mourning

So here we are, 4 weeks into the new treatment of weekly taxol, herceptin and perjeta. It's been an interesting 4 weeks thus far.

Week 1, I came down with a fever of 101.5 and Mike had to do a late night run to the pharmacy for antibiotics and I had to go in the next day for blood work from both my arm and my port, to make sure there wasn't an infection in the part itself. I also had to do chest x-rays. It was a really long day at the doctor on a Friday, followed by my regularly scheduled 4-5 hour infusion the following Monday.

Week 2 we discovered I was having what's called "neuropathy" which presented as increased sensitivity in the palms of my hands, soles of my feet and inside my mouth (peppermint toothpaste tingles and stings a bit more than usual right now). It's as if there's a mild sunburn on my palms and soles - that's kind of what it feels like - the stingy sensitivity. So - to help curb this, I'm icing my hands and feet whenever I get a taxol infusion. The cold is supposed to keep blood flow away (which is why cold-capping works for keeping your hair during chemo) and thus less chemo gets to your hands and feet and thus - less neuropathy. Since I started icing, the neuropathy hasn't gotten any worse - so I figure it's a win.

Week 3 I had the worst crash from the decadron (a steroid). I'm given steriods, benadry and an antacid each week, before each infusion, "just in case" there's a reaction. The steroid keeps me buzzing on Monday when we get home, makes me a little edgy (maybe a lot), makes it hard for me to sleep Monday night and then almost pushes me all the way through until about pick-up time on Tuesday - when I subsequently start to crash from fatigue - just in time for the boys to be home. Wednesday and Thursday I go through a low period ... a drained, just UGGGHHHH feeling, and then I start to come back to normal on Friday, Saturday and Sunday.

Week 4 - this week - I asked if we could lower the steroids and yes - we could. So I only received half the dose of roids and I feel a lot better. But the event of this week has been the hair. It started shedding noticeably in week 3 and almost immediately after we got home from week 4's infusion, it started coming out even more.

Many people - people not going through chemo, or who have only ever gone through chemo during early-stage treatment - tend to say "it's just hair." And yes, it is just hair ... but it's just hair until it's YOUR hair. And it's JUST hair until you have the very real threat of never having hair again because you are perpetually in treatment -- perpetual treatment that involves varying chemotherapies and radiation as the primary methods of said treatment.

As I stood in front of the mirror - after spending about half an hour crying in the shower - I looked at myself, holding the scissors open against a tiny ponytail on the front of my scalp - and I just had the hardest time making that first cut. Would I ever have long hair again? It took years to get my hair to it's current length well below my shoulders. Would I ever again have years where I don't have treatment that causes hair loss? Will I have years ... period?? Is it one more step toward death ... ?

Letting go of my hair during early stage treatment was easier - I knew in my heart that it would be back. Letting go of my hair this time - is much more emotional. It's letting go of a piece of me that has always been an identifying characteristic of who I am. I've always had really long hair. Always. I won "best hair" in high school for goodness sakes. It was something people would use to describe me when they're trying to describe me to someone who doesn't know me.

I sat there crying after it was done. Mike knelt down in front of me and just comforted me - let me cry - did his best to console me. I cried to him about how I feel like so much is just constantly being taken from me - over and over again - because of this stupid disease. Since being diagnosed with cancer in 2010, I've permanently given up my breasts and my ovaries - two really feminizing features. I mean c'mon - aside from the vagina - they kinda mean you're a women. And now - I very well may have said goodbye to my long hair permanently. As you can imagine - the next day after I cut it all off - I did a full face of make-up and wore a dress.

Aside from all this - overall - it's been ok. I feel relatively normal, have steady energy and minimal fatigue, this week especially since we lowered the steroids. I'm a bit surprised at how relatively easy this has been so far. We scan in 2-3 weeks to check things out. Needless to say I'm insanely hopeful for good results. I keep checking the lump on the side of my throat for progress - to see if it's shrinking at all. Honestly - I can't freaking tell. I am so hopeful that it is, that sometimes I think yes! It's shrinking. Other times - it feels very much the same. So who knows. For now I'm just trying to enjoy the lower stress that being on a new treatment brings and the calm that exists within this new period, before we have scans. I've limited my research and digging for now and am just trying to enjoy having my momma here and the beauty that is late spring.

Thursday, May 11, 2017

Small cells, big changes

Remember back in January this year when I wrote about coming up on my 1 year mark, I was having a particularly challenging morning already and then I logged into work and the first URL I saw in the folder list was "small-cells-big-changes?" I felt like my mind was going to burst and that the Universe was trying to tell me something.

Well ... it's been 4 months since then. And do you know what? That "small-cells-big-changes" webpage hasn't even come up one time in these past 4 months, until recently. It actually came through as an overall question that just happened to be directed to me, because I have an existing relationship with the page owner, and her support team couldn't solve her issue. I had to scroll down in her email to find the issue, and low and behold - there it was. That same URL again - by chance. Absolutely no direct reason for it to be in my mailbox, I wasn't assigned to work on the page, but there it was again by happenstance. At the same time medically, me and my doctors were working on getting my latest pathology from my liver biopsy. We had part of it, but not all of it, and that last bit was really important on multiple levels.

So here's what happened. 

I had the liver biopsy with the intention of exploiting the FGFR2 amplification that showed up in my genomic sequencing in early 2016, and then using that mutation to join the NCI MATCH trial. While we waited for the biopsy and results, etc. I was off treatment. It was a calculated risk - but I had high hopes for the next treatment that was to come from this trial. 

We got the results from NCI about 3 weeks later after the biopsy. My mom was here. We went to go watch Beauty and the Beast since - I live in a house full of boys - I hadn't seen it yet. (I loved it btw.) I most likely need to watch the movie again because I stepped out multiple times to take medical phone calls. The results were in. The NCI report showed the FGFR2 amplification was gone and there are no other actionable mutations for the MATCH trial. I'm not a candidate.


Also, the pathology results from the biopsy showed negative for estrogen and progesterone. 

Wait ... negative??

We don't have the Her2 status yet, but we're checking back with the pathologist to see if they ran it. If not, we'll request they run it. 

1,000,000 questions ran through my head as I listened to the results while at the same time tears welled up in my eyes. Negative. It's only been 12 months. Is it common for that to happen after 12 months? I'm not a candidate for the trial. I have to pick a new treatment AGAIN. I've been off treatment for 3 months now while I was waiting for this trial. I have to pick a new treatment. I have to get online. Shit - I have to walk back toward the exit doors because my phone just cut out and I'm losing reception - she can't hear me. 


SO - long story short, I was shocked, I now needed to pick a new treatment regiment again, we were still waiting on one piece of pathology to get a full picture of what the cancer type was ... meanwhile my tumor markers are doubling and tripling based on my most recent lab reports. My local oncologist was hounding me to come in, concerned about my marker levels, and wanted me to make a choice. She wasn't receiving updates from my oncologist in San Antonio and she was frustrated she was left out of the loop.

All in all - a much longer story encompasses all this - but honestly - it was a lot to live through and process - the up and down and indecision and coming to terms with everything that I have to do next - it's a lot so I'll spare you all of the intensity - because it was seriously intense. The short of it is this - I go in tomorrow morning for a port placement (essentially a device that they implant under your skin with a catheter that runs down one of your major veins so they don't have to set an IV each time you need treatment) and on Monday I start 24 weeks of IV chemo plus two targeted therapy drugs, also administered via IV.


The small cells indeed had big changes. The original cancer cells from 2010 and the metastatic ones found in 2016 were hormone positive, Her2 negative. This means they essentially fed off of the female hormones estrogen and progesterone and were negative for an over abundance of a protein receptor on the cell surface called "Her2." A receptor is like a lock and things in your blood that fit into them are like keys. When a cell has more receptors than it's supposed to, it picks up more keys than it's supposed to, and it sends more signals than it's supposed to, and things get out of control (like cell division). So the original tumor cells used hormones as their keys to growth. My most recent liver biopsy however revealed that the cells taken from my liver were no longer this same pathology. They were actually negative for hormone receptiveness and positive for Her2. This is a big change.

Why is it big? Well, there are multiple reasons but the most important reason is this - there are really, really good medications out on the market that target the Her2 amplification. Many women who've I've talked to as well as the numerous studies I've read, all confirm that there is a very good chance at a long-term, durable, stable or better response. And when I say "long term" here I mean like multiple years. There are many women who end up with "no evidence of disease" on their scans. Getting to NED is the holy grail of cancer treatment and something every single cancer patient - regardless of cancer stage - hopes for. It means cancer cannot be detected on your scans. That's as good as it gets.

But there's a catch.

In order to get these two amazing drugs, called Herceptin and Perjeta, you have to do chemo with them first. They were studied in clinical trials with chemo and thus released to the market for use with chemo and their combination has become the standard of care for first-line Her2 positive treatment. Most doctors won't prescribe them without chemo first and even if they did, insurance most likely won't pay for it without chemo first. (Which goes to show you who is really in control of your treatment - insurance, not your doctor. And if you haven't already guessed, I know this because, yes ... I tried to get around it.)

The chemo I agreed to is called Taxol and it's delivered in small, weekly doses. Herceptin and Perjeta (H+P) is given once every 3 weeks. The "plan" is to go for 16-24 weekly infusions of Taxol with H+P every three weeks, and then drop Taxol and continue on just H+P for as long as it continues to work (e.g. scans don't show any progression). We'll scan 6 weeks after THP treatment starts to assess if things are trending in the direction we want them to. As I'm sure you can now understand, this is why I agreed to the port - despite my sincere desire to not have one placed. As a stage 4 patient, the odds that the port comes out are slim, as the assumption is I will always be in treatment. Aside from it not coming out, it will be ANOTHER visible reminder that I am a cancer patient. It will be visible to me and most likely many others depending on the neckline of my shirt. Ports tend to be higher up on one side of the chest. Hello summer in Texas, meet my port.

So how am I feeling about all of this. Well. I'm pretty over whelmed and seriously tapped out emotionally and mentally. I took time away from work this week and next so I can just breathe and try to get my mind around everything and get to some place of acceptance. I tried to explain to Camden tonight before bed about what I'm having done tomorrow and it nearly broke me down into tears. I'm not looking forward to explaining to him how the medicine I'm taking will make my hair fall out. I'm also not looking forward to how Nicholas might react seeing me with a bald head. He might be fine, or he might be scared.

And can we talk about my hair for just a few sentences. It JUST started to feel normal again. From stress, pregnancy shedding, radiation, menopause ... the baby hairs actually have some decent length and I can feel my original hair thickness again. It's been like - 2 years since my hair was normal. And yes, yes, everyone says it's JUST hair. Well you know what - yeah ... it's just hair until it's YOUR hair. Go shave your head right now and keep it that way for the next 6 to 9 months and then tell me if you have any reservations about it. There is a small chance it doesn't fall out on this dosing schedule of Taxol, and instead just thins out ... but it's a very small chance. So I'm not expecting it. I'm hoping ... but not expecting.

And to answer the other question of how did the cells make these big changes? Well, I have a hypothesis. (Of course I do!) In 2016 when Stanford reviewed the original tumor cells from 2010 (yes, the slides are still being stored), they noted that part of the cancer cells had a section of Her2 positive cells scoring at a level 3 (which is the highest, meaning it was very strong). My hypothesis is that the anti-hormone therapy that I was on in 2016 (Ibrance and Letrozole) did it's job and killed the majority of the hormone+, Her2- cancer cells. However, the pressure from removing all the "hormone keys" if you will, forced the cancer cells to find a new way to grow (because that's what they do, they're broken and don't know how to stop growing), and that new way to grow was to through the already existing Her2+ locks. So new tumors started to appear in my liver and a handful in my right lung and based on the biopsy, we believe these new ones are all hormone-, Her2+. That isn't to say there aren't any of the hormone+, Her2- negative cells anymore ... it's actually very likely that there are. It's just that we didn't get a sample that had them. The hope is that chemo will "mop those up" if they are still surviving.

Is the Universe trying to send me a message? I honestly believe in my heart that it is. Aside from the "small-cells-big-changes" URL crossing my path at the two critical points in time, I also kept seeing the word "fearless" on days when I had to make very hard decisions. I saw it 3 times specifically - twice when I was researching and discussing treatments ping-ponging between opinions and the third time was this week - as I mentally and emotionally prepare for my port and chemo, as if it was a reminder. Why is it significant? Because I was - and still am - terrified of going through chemo! Additionally, the night before the day I had my doctor's appointment to discuss my next treatment decision, Camden randomly said to me as he was going to bed, "Mom you need to cut your hair. It's getting close to your back." One would think it's not some uncommon thing to say, however Camden NEVER comments on my hair. Never. And it stopped me, and made me take notice. That next morning after he said that, I had my doctor's appointment and I opted to go down the chemo road because my local doctor would not treat me with the "other" path I was trying to take (that's another long story). And finally, a good friend of mine randomly sent me a sign - like literally - it's a wooden sign - that says "cured and done." Any one of these things separately I wouldn't weigh very much, however together ... they do give me pause ... and a good bit of hope that I will be one of those exceptional responders to this drug combo for many, many, many years.

Friday, April 14, 2017

Liver biopsy and then some

2 weeks ago I had the liver biopsy for the NCI MATCH trial. All in all I was told they took 8 core needle samples. I was "told" this because I truly can't recall the procedure. I remember checking in and being incredibly anxious. I was super fearful of the procedure because my last biopsy in 2010 was not fun and I still to this day remember very vividly how it went and how I violently trembled on the procedure table. I remember everything and I feel like I felt everything, despite any meds they may have given me back then. So of course I researched how the liver procedure would go and of course it scared the crap out of me. They numb the area and then push the needle through with the help of a CT scan to guide them. They have to push through the liver capsule and there's supposed to be a "pop" as the needle breaks through. This right here - is what freaked me the fuck out. So the entire time I'm sitting in pre-op, I'm quite, anxious and teary eyed.

Let me talk a little bit about how peculiar pre-op was. The nurses that prepped me were incredibly sweet. One of them took her first look at me and just came over and embraced me. She could read the worry and fear all over my face. She whispered in my ear and told me it was going to be OK. That I was going to be OK. She stepped back, held my shoulders and smiled at me. Then she continued with taking my history, entering vitals, etc. She asked me what my favorite color was, told us about her two sons, one of which is in medical school, left and came back with a handwritten note and a handmade angel (in my favorite color). She told us the doctor would be stopping by soon.

And he did. The interventional radiologist came in just a few minutes later. He was a tall man, medium-blonde hair, medium-to-large build. He was wearing a magenta (yes magenta) button down shirt with the collar open (quite open), blue jeans, cowboy boots and notably lacked the traditional, white lab coat. He set his perrier down on the table and sat -- not casually leaned or a half-cheek semi-sit, no - a full on seat, with both legs hanging off - and his bottom on - the end of my hospital bed. He covered the procedure, made sure I understood what I was there for and assured me that they would have good meds for me. So good in fact, he said, I very well may wake up with a tattoo on my ass and not even know it. But it will be fine. He's a pro.

After he answered my questions, he left and the nurse that gave me the angel came back. She grabbed my and Mike's hands, asked us to close the circle and she said a prayer for me. It made me cry. Once finished, she hugged me again and left. And just when I didn't think things could go any more differently than I what I was accustomed to - shortly thereafter - the nurse who was going to be with me during the procedure came to greet me. Her name was Glenda.

It was official, I thought. I was in OZ. And not at the beginning of the yellow brick road. No. I was in the Emerald City. The nurses were the people of the city and the great and powerful OZ himself wore a magenta shirt and Glenda the Good Witch - she was the one with the "good meds."

They wheeled me back to the procedure room. Mike stayed with me as long as they allowed. The CT Tech - a larger hispanic man who spoke really quickly and was seemingly irritated by whomever kept ringing the procedure room phone with questions - told self-deprecating jokes in an effort to calm me down and break the nervous tension that was rolling off of me. No such luck munchkin. Your time is better spent peering through the square in the large emerald doors to the city.

After about 30 minutes of bad jokes, it was time to move me onto the CT scanner table. It was the gatekeeper's turn to drive. The room was all set. He adjusted my position in and out of the scanner, assessing position, drawing on my ribcage and marking areas that indicate "do not cross." Glenda hooked up oxygen and secured some straps around my hips and legs so I didn't roll off the table. When it was all set, she leaned over my ear and whispered "Ok, I'm starting the good meds now." I remember feeling them hit - similar to that buzzed feeling you notice when you have a few drinks - you recognize the relaxation and distortion. And that's it. I don't remember what happened next.

My next memory of the procedure is waking up to Glenda telling me "Ok sweetie, we're all done." I replied with, "What?" And then my conscience mind registered the pain in my side. We weren't in OZ anymore. I started shaking - either from the withdraw of the meds or the pain or both but all I could say was it hurts, it hurts, it hurts. They shimmy me back onto the CT table and do another quick scan to make sure that it indeed I just hurt and aren't - in fact - internally bleeding. Nope. It just hurts.

I'm back in the same spot in the pre-op room - which is now my recovery room. I'm not sure how long I was there, how long I was out. I remember Glenda floating back in to hand me a norco because I kept saying it hurt. After that, I most likely passed out again for a bit more. I'm not sure. When it was time to leave, they wheeled me out to our truck and I was almost motion sick from the ride to the curb. It was an hour and a half ride home. Glenda sent me with a puke bucket and bag, just in case. We only made it out of the hospital parking lot before I puked.

After about an hour Mike indulged me by stopping at Dairy Queen. I got a plain vanilla cone - and I managed to keep it down the rest of the ride home. Mike put me to bed, rested for a never-long-enough minute for himself, and at 5 pm went to pick up the boys. I got up when they got home. We managed dinner for them and bedtime. I managed to eat a bit more - some fruit, strawberries specifically. Once the kids were down, I stopped at the fridge, took a swig of orange juice and went to get ready for bed. After about 3 minutes of laying down in bed, I jump up, run to my sink - and puke. everything. Hence my vivid memories of strawberries and juice. I should had stopped at the berries.

I threw up one more time that night, kept nothing down. I turned out the light and figured I'd try again tomorrow. Tomorrow was better. I woke, ate, had coffee, water ... all was much better. I just felt super hungover - just all over icky from all the memory-erasing and pain-erasing meds they pumped through me during that brief procedure.

It's been two weeks now since the biopsy. Every day I felt a little bit better. Every day I felt more crap clear my body. I've tolerated a lingering side-ache however. It wasn't bothersome until two nights ago. I rolled to my left side in my sleep, my preferred side, and it felt like a bubble or something surfaced into my right rib-cage. It hurt. And was alarming. So I rolled back over flat, let the pain dissipate and went back to sleep. Some time during the night I did it again two more times, and again the pain woke me each time. At 6:30 AM I decided I would let Mike sleep until Cam came in the room as per usual, and once Mike was kinda awake - I'd tell him that I think we need to go to the ER.

So I did. And he asked, "It's that bad that you need the ER?" No. I tell him, "I thought about urgent care but they don't have a CT scanner so they're just going to refer me, so I figure going straight to the ER is the fastest way to resolve this and be back in time to get the boys from school." Yeah. Cuz that's how people who are dealing with this crazy kind of medical shit and who are also raising two very young children and who are also working full time - have to think when it comes to an ER visit. It's not about the pain - it's not about remedying the situation at all costs - it's about balance and negotiation. How can we take care of potential internal bleeding and still be back in time to be parents? Oh - and we should probably bring our computers with us because we know ER visits are minimum 4 hours with 3 of those hours usually spent idle in the treatment room. Might as well get some work done while we wait.

We check in at 9 am. They take me back right away. I change. They set an IV (painfully). They take some blood. The doc comes in to talk to me to get his understanding of what's going on. He taps on my back. He says OK. We'll get you set up for a scan. He leaves. They try to take more blood because something happened with the first sample during processing. It's even more painful than setting the IV. Finally I get called back for the scan. They wheel me over in the hospital bed - because again - no one is allowed to walk in a hospital. We get to the CT room and the tech tries to flush my IV to test it before he hooks me to the contrast injector machine. I nearly jump off the table. The saline push burned so bad it was like my fucking vein exploded in my hand. He tries again - still hurts. Tries again but slower ... still freaking hurts! He calls in the nurse. She tries it. STILL HURTS PEOPLE. I finally break and tell them listen - set another IV if you have to because this is painful. So they do. And it doesn't hurt nearly as much and pushing saline through it doesn't hurt any longer - it just tastes bad. My hand - on the other hand - feels like it was hit with a hammer.

Long story shortened - they scan me, we wait for results, we finally talk to the doc. There's a small sub capsular hematoma (bit of blood) in my liver, but that's most likely not causing the pain. There's also a mild to moderate pleural effusion around the base of my right lung, which most likely is the culprit. Especially because it feels the worst when I'm laying down and that side is up. The fluid can move around and can be painful as it does. Think of it like a level ... the air bubble always rises to the top. Well, that pocket of fluid between my lung and the lung lining, rises to the top when I lay on my left side. And what's the cause of the pleural effusion? Most likely mets he says. Mets in my lung that is irritating that delicate lining. Most likely not caused by the biopsy.

Well fuck.

That's what I get for asking to get scanned. The pleural effusion wasn't noted in February. It's been 3 months without "effective treatment" as my doctors would call it. If this little bit of scan is any indicator of what is to come during my next PET CT - which is supposed to happen in the next couple weeks - then I need to get my mind right and ready to receive some shitty news.

Do I believe the fluid is from new mets? I don't. I honestly believe it's from the biopsy. I believe they either nicked the lining or just the procedure itself irritated my liver which in turn irritated my lung because it's all in the same area. The fluid pocket is in the bottom, back portion of my right lung, centimeters away from where they took samples from my liver. I believe it's from the procedure. I could be completely wrong - but we'll see I guess.

Currently I'm waiting for the NCI MATCH central lab to finish processing my biopsy and assign me to the drug arm that matches the genomic mutation and correlating drug. Hopefully we'll hear back from them next week. The trial coordinator thought it would be this week, but so far, nothing yet.

In the meantime, today is Good Friday. Camden was home from school today, but Nicholas' daycare was still open. So while Nicholas was at care, Camden and I caught a mother-son movie. We haven't had a mom-son date in a while. He's currently into Power Rangers, so of course, we saw Power Rangers. Someone should have warned me that they don't even morph into their armor and start really being "Power Rangers" until the last 20 minutes of the 2 hour movie! Add to that the 15 minutes of previews before the damn thing started - do you know how hard it is to keep a 4 year old seated for 2.5 hours while we wait for 20 minutes of monster growing, sparks flying, karate-chopping, 4 year old attention-holding action? It's freaking hard! Thank goodness the movie has been out for a while and there were less than 10 people in the theater. I finally moved us down to the entrance row and let him go bananas in the walkway until the movie was enough to capture his attention. Talk about stressful.

Earlier this morning I tested laying on my left side, to see if the pain would return. It surprisingly didn't. It still wasn't normal feeling - but it was painful like yesterday. I could be a fluke, it could be not. Either way, I'm sure I'll be testing it again and again until we get new scans to tell us what the frick is happening inside. Those scans will set the baseline for the trial - what we'll measure success against.

I cannot tell you enough how incredibly hopeful I am for this trial drug to work. I seriously can't. I try not to put all my eggs in this basket - but it's hard not to. Really hard.