Monday, October 23, 2017

Living in-between

So - it's October and Halloween is seriously on the horizon. It's also been 4.5 months since my last update and I'm sorry! But, as the title suggests - we've been busy living "in-between" - in-between treatments, in-between appointments, in-between the hours sometimes. It all depends on what's going on that particular day. But lately - it's been in-between appointments - which is good. It means that my latest treatment is working. Praise everything.

SO - since June, when I had to shave my head because the IV chemo Taxol was making it all fall out. It's been busy since then. Let me fill you in.

6 weeks after starting Taxol, Heceptin and Perjeta - we had a PET scan. The treatment wasn't working as hoped. My liver and bones were good ... but my right lung ... not so much. In fact, my right lung was in such bad shape that the scan couldn't even really tell what was going on in there because there was so much fluid in my lung that it was collapsed on the scan because I was laying down. Yeah. Almost complete collapsed right lung. There were a good handful of spots/lesions/tumors in the pleura (the lining around the lung) as well as in the lung tissue itself that it was irritating the lining and creating fluid build up ... kinda like how you get a blister from the irritation. Only there was about 2 liters of fluid in between the lining and the lung itself. Yeah .... a two liter ... in my chest.

Needless to say, I had to have another procedure to drain the fluid. I went in for a thorencentisis shortly after that scan. They injected some numbing meds into my mid-back, toward the base of my lung, inserted a catheter (like an IV), and turned on the pump. And after about 30-45 minutes of the sound of peeing ... they extracted 1.5 liters of fluid from my lung. They estimated about half a liter was still in there, but to push it that far - it gets a bit dicey ... so we opted to stop at 1.5 liters. It looked like pee ... or beer ... feel free to pick your preference. But I'm told that it was completely normal in color. Praise everything ... again. Because the alternative is red, or bloody ... and indicative of something else going on.

As you can guess, since the scans revealed everything but the lung responding, we had to pivot treatment. I stopped the IV chemo Taxol and switched to the oral chemo Xeloda, and continued Herceptin. (Remember my attempt at pushing for this oral chemo initially - BEFORE IV chemo?? Yeah. Don't get me started on this path because I feel like I lost my hair for nothing.) I take Xeloda (zeh-lo-duh) for 14 days "on" and then take a break for 7 days. This 21 day pattern is considered one cycle. Common side effects are something called "Hand and Foot Syndrome" and GI issues. I got both. After cycle 2 - we scanned again. And guess what - it's working.

As of my August scan, liver and bone are still clear. The report even said my liver looked "normal"!!!! Super good news. My right lung - almost everything resolved. Almost everything! Just one or two "residual" spots remained that were only "mildly" active. The hope is that those spots are on their way to ultimate, permanent cell death. Praise everything - again and again.

Since we've had to scan so close together, every 6 weeks for these last two treatments, my PET and brain MRI scans are out of sync. So that means I had to have my PET in August and my brain MRI in October. I had that earlier this month. And you know what? It was completely normal. Not even scar tissue showing up on the scan. I was able to cancel my appointment with my neuro oncologist because of such a good scan. Do you know how even amazing it is to be able to cancel an appointment and not the reverse?!!! So nice.

So here we are! Existing in-between these cycles of treatment and scans and appointments. I'm currently on cycle 5 of Xeloda right now and will be re-scanned again at the end of November.

So what have we been doing in this "in-between" time? We've been doing all the things regular people do - stressing over work, and going to pumpkin patches, and stressing over kid craziness, picking Halloween costumes, and just enjoying life. I've been taking western horseback riding lessons for the last few months - since June actually - and it's the best therapy I could ask for. It fills my spirit with such positivity and allows me to truly forget all my stresses because c'mon - you really have to be present when you're sitting in the saddle on a huge animal who is tuned into everything you're thinking and feeling. You're excited? He's excited ... which means he's trotting faster, loping faster ... trying to match your energy. It really makes me stay focused and control my energy and remain in a calm state. And to confirm it - my Apple watch actually shows that the hour I'm in the saddle - my heart rate actually drops by 10 points for that entire time.

ANYHOW. I could go on for a while about how much I'm enjoying these lessons and how much I'm really wanting to get my own horse ... but that's for another post haha.

As we roll into the holidays, I'm excited that my amazing cousins are coming out to celebrate Thanksgiving with us. My mom is (I think) planning on being here for Nicholas' 2nd birthday and Christmas. I'm taking more time to just enjoy being normal, for this time. I don't know how long we'll have it - and so I'm going to embrace every minute of it I can. My hair is growing back (slowly but surely) and I'm anxious for it to get a few more inches so I can try extensions. I'm nervous I may never have long hair again, so ... extensions are on the horizon. I think lol.

So in-between is where we live. And it's amazing. It may be denial, it may be truth. But either way ... it's life. And that's most important above all. I would normally apologize for being long in-between posts - but ... nah. I'm not. Cuz I was busy embracing living.

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.