Chemo... Part II.

Prepping Cold Caps.

Prepping Cold Caps.

Round two was much like round one, but with a little less chaos. This time it was just myself and my husband, and he was doing the cold cap work. So, we still had some chaos, but with just the two of us, it was a little more peaceful. I felt for him, needing to check temperatures, rotate caps, make sure they were cold but not too cold... sitting on dry ice, but with protection, etc. 

We drove down in the morning with back windows down and a cooler full of dry ice and cold caps. Took a walk in the parking lot before heading upstairs. Once upstairs, we got settled, the nurse took my weight then started the IV. Turns out I don't have great veins for an IV when it is an IV for chemo. This was the first day my nurse and I discussed a port... but with only two more rounds left it seemed kind of silly to get a port placed. So, we decided to power on for the last two. 

At the end of the infusion I still had four hours of cold capping. They were nice enough to give us an exam room to hang out in for the four hours, but it was not comfy or relaxing, at all. I was definitely questioning my attempt to save my hair. I wasn't sure it was worth it, that is for sure. 

Scarf time.

Scarf time.

The next few days went pretty much like the first round. My breathing was a little bit tighter this time, and the fatigue was definitely stronger. My hair was also shedding, a LOT. I started to have some pretty serious balding spots. By day 6 after the second infusion I had decided to wear a scarf like a headband to cover the bald spots on top. 

Then, on day 10 post second infusion, I had a great day at work after a big set of presentations. I came home and got changed for the afternoon and evening. Took a nap, had a snack and was enjoying a nice dinner with my husband. Then... bam... hives. On my head, my face, my neck and shoulders. They were enormous hives... like I've never seen. 

Benadryl was to the rescue and I went straight to bed. Well, I woke up in the morning with hives from head to toe, with a lot of swelling. Breathing was a little tight, but mostly I was one big hive that itched something fierce. I took more Benadryl and e-mailed my doctor. It was a Saturday. She e-mailed me back right away and moved me to prednisone given that Benadryl was doing nothing for me. 

Prednisone. I took this as a kid for my asthma and I didn't love it. I was not happy I had to take it, but was happy that it would help the hives. This whole thing meant the next chemo was on pause until we knew the hives were gone, or at least much less severe and managed well. After a couple days, things were much better. Then, I saw my doctor a few days later and things were looking very good. We were going to change my regimen, for sure, as she and the entire pharmaceutical team agreed that the chance of severe allergic reaction was likely (anaphylactic shock was all I needed to hear to be convinced we had to move to something new).

Hives... hives, everywhere.

Hives... hives, everywhere.

Things were looking good. Then we drove home and by the next morning I was in full hive mode again and my entire right arm was swollen up to the armpit, the left was swollen to the upper arm. I was worried I'd now triggered lymphedema, and the itching was unbearable. I e-mailed my doctor, with pictures, and she immediately prescribed a second round of prednisone and cancelled the next chemo round, which put me a week behind schedule, in the best case.

It was in this moment that I... Lost. My. Shit. I was uncomfortable, unable to do any activities because it made the hives worse, and it was a hot summer, which didn't help. I felt trapped and my hair was falling out in big clumps. I told my husband we were done with the cold caps and asked him to get them ready to ship back. I then got pissed off at my hives and just had a pissed off day. I took the first pill in the new round of prednisone, then called my friend and asked her to come over and shave my head. I poured her a glass of wine, me a glass of sparkling water and the prednisone kicked in and with every lock of hair that fell I felt a huge weight lift from my shoulders. It went from being the worst day to the best day! 

Those cold caps... they were NOT for me. They made me feel less in control, not more, and they limited my activities and stressed me out on infusion day. I am so glad I gave them up (but also glad I tried)! 

Because I was allergic to the Taxotere drug, I was moved to a new cocktail of Abraxane and Carboplatin. Abraxane was to be administered weekly for six weeks and Carboplatin would be every three weeks. Turns out Abraxane is pretty much the same drug as Taxotere, but the delivery chemical is very different. For Taxotere it is a synthetic material and with Abraxane, it is an animal fat. 

Now, as you can see, I'm would now have six infusions, instead of two, so it was clear that I'd need a port. So, as soon as the hives got managed (thankfully, it was only a week delay), I did have my first new drug cocktail, via IV and then got a port a couple days after that. My nurse helped me see the beauty of the port (and my arm with blown veins also made it clear). She took me through the entire procedure of getting a port, and told me all the things that would be easier if I had one. I was sold! 

First chemo post cold caps.

First chemo post cold caps.

Also, I should note, this was the first infusion with no cold caps and it was glorious. I got to relax, get to know the nurses, spend a nice couple hours with my husband and just... be. The nurses both said they felt like they saw the real me that day, and they were right! 

With the new cocktail, I had similar symptoms for the few days after the infusion, but the Carboplatin increased my nausea quite a bit. But, no additional itching or swelling. The hives were still around (and according to my oncologist, might take months to really go away) but the prednisone did its job and my daily Zyrtec did keep them at bay. I was so thankful to have just a few patches at any given time.

So... I was well on my way to completing chemo. Still had 50% left to get through, but the new plan felt good. I was on the upswing, and ready to get my port in for the rest of the infusions! 

I never thought I'd be so happy to be able to get chemo again!

 

Chemo... Part I.

June 22, 2017. I confirm with the cold cap company that a woman will meet my husband and I at the infusion center to train him on the cold caps. My appointment is at 9AM, so we will meet there at 8AM so I can start the first cap by 30 minutes before infusion.

June 28, 2017. I am at the drugstore picking up prescriptions to take during chemo. One of the pill bottles actually says, "Take 1 day before and 1 day after CHEMOTHERAPY." This, somehow, makes it real. I am really going to get chemo. 

June 30, 2017. We are out the door by 5:30AM. I've got my large water bottle, snacks and a cup of decaf coffee for the road. We live about 2 hours from the infusion center, so it's a bit of a trek. The drive is easy, and we get there a little early, so we take a walk around the parking lot. Then we head upstairs. 

The cold cap woman met us in the waiting room. She had a cooler full of dry ice and cold caps. An electric blanket (for me to wear, because I will get very cold!) and heavy duty gloves to handle the caps. I officially felt like we were a circus that had come into this quiet environment and I wondered if it would really be worth it. But, we charge on. It would be a long day, not only did I need to wear the cap for 30 minutes before the infusion, I had to wear it during infusion and for FOUR hours after infusion! The center was not really prepared for the four hours after infusion, but they were very nice and let me stay in my chair for the four hours. 

As they brought us into the room, I seriously felt more like I was headed into a spa than a chemo room! The chairs were really nice and there were big windows, and, it was actually quite peaceful. There were only a couple of us at that hour, but soon, others arrived for their infusion. 

First, they weighed me so they could put together the right amount of meds. Then they got the IV in, which we found out, is not so easy on me for chemo. I have great veins in my elbow area, but they do not administer chemo in that location (or near joints) if they can help it, so they look for a vein in my lower arm. This proves to be difficult, and is a foreshadow to what will become an ongoing issue that requires attention.

In my Cold Cap get-up!

In my Cold Cap get-up!

Once they get the IV placed, they drew blood and ran a couple tests, mostly to make sure I'm okay to receive chemo. On the first day, it all came back looking good, and so we began. 

Now, by this time I was fully in cold cap mode (they switch the cap to a cap that has been on ice every 30 minutes), so to be honest, it was kind of a blur. 

The chemo I received that day was referred to a TC. It stands for Taxotere and Cytoxan. These are two drugs that, together, made up my chemo treatment. I was scheduled to receive four rounds in total. One every three weeks.

To start, they gave me a bag of Benadryl (this is to stop allergic reaction to the Taxotere delivery agent). They also administered a steroid and an anti-nausea drug that works for up to five days. The Benadryl made me very sleepy, so I went in and out of sleep for the first half of the infusion.

As she started the first bag of chemo (Taxotere) I tasted it immediately. Metallic is the best way to describe it. I also felt a stomach flip, so I ate a couple crackers, drank some tea and then fell asleep until the next cold cap had to be put on. 

Once the Taxotere was done, they came over and took that bag down. Then they put up the Cytoxan. As soon as this one started, I taste it again, but I also had a wave of nausea. I ate some more snacks, and that worked. It turns out, eating snacks during chemo can help a bunch. Also, while going through chemo, in general, the rule is to never let your stomach get empty. This really helps with nausea. 

Chemo is done, IV is pulled, and we do the caps for four more hours, then leave the center at 4PM. The drive home was uneventful. 

I need to take steroids the day before, the day of (they administer these via IV) and the day after. So, as much as I was tired from a long day, I was actually on a decent steroid high, which made it hard to sleep. The Benadryl sleepiness only lasted a couple hours. I took Ativan that night to help me sleep and to help keep nausea and bay (Ativan is a miracle drug... it does it all!). 

The day after I was tired, but still have steroids to take, so have the steroid high hanging on. This lasted for another full day. 

My chemo was administered on a Friday, and I thought I'd see friends on Sunday afternoon because on Saturday, and even Sunday morning I was still feeling pretty good. Then, Sunday around 2PM it hit. The steroid high was gone and I was hit with a wave of fatigue like I hadn't felt since having mono when I was 26. I couldn't keep my eyes open, much less, see a friend. So, I slept all afternoon, ate in between naps, and then slept all night. The next morning I awoke and could barely make myself move enough to go to the bathroom. I was definitely not going to work. 

I texted work to say I wouldn't be in. The next thing I knew it was 1:30PM. I hadn't slept in that late since college, and even in college sleeping this late was rare! I got up, ate some avocado toast and an apple, and then laid (slept) on the couch for change of scenery. I didn't have bad nausea, thankfully, but the fatigue was strong. 

Then, the next day, I woke up and had a lot more energy. So, I went into work and it was good to be somewhere that made things feel normal. From that day on, I progressively felt better, but also, progressively lost my taste. I could smell everything, but couldn't taste anything! So frustrating. 

Cosmo... and I still have hair!

Cosmo... and I still have hair!

The weekend before the next infusion, my husband and I had a mini local vacation because I had won a hotel room at a place on the ocean. So, we stayed there that Saturday and walked to dinner at a nice restaurant right on the cliffs. I had one drink (my oncologist approved it) and realized that my taste was coming back a bit. When I got my dinner, I could taste for the first time in two weeks and it was fabulous!

The five or so days before the next infusion were my best. In fact, by that time, I was seven weeks post surgery and getting much of my range of motion back. I felt so good that a friend and I went on a hike up one of the local peaks. It was amazing!

First Hike - Seven Weeks Post Surgery, 2.5 Weeks Post First Chemo.

First Hike - Seven Weeks Post Surgery, 2.5 Weeks Post First Chemo.

I couldn't believe I was hiking while doing chemo (and, really, so soon after a double mastectomy!). The hardest part was dealing with my hair because when cold capping you're not supposed to wear a hat or get your head too hot. But, during chemo, you're very sensitive to sun, so a hat is a must. Well, I slathered on the sunscreen, went without a hat, and pulled the hair into a very loose ponytail. I did my best! There was no way my hair was going to keep me from the trail. 

Irish Hills Hike The Night Before Round Two!

Irish Hills Hike The Night Before Round Two!

Then, a couple days later, we did one more hike. Then, the next day, I was headed back for round two. Knowing I was about to go through the whole process again, and chemo is cumulative, so I knew the side effect could be a little more severe. I was not looking forward to the cold caps... but I only had three more rounds, so I would just suck it up in hopes of saving the hair. 

But the evening before the next infusion, I enjoyed the views from the top of the hill that extended all the way to the ocean. 

June 20th.

The big day came which included two appointments. First, a follow-up with my surgeon, second, with my Medical Oncologist (MO). I was anxious for both of them, because I was feeling so much better, getting some range of motion back, and I knew that the Oncotype Score would determine my treatment path.

So, to quickly let you know about Oncotype scoring... this is a genome test that goes across 21 genes in the tumor itself. It predicts the chance of recurrence. I qualified for the test because I was ER+, Node Negative and Her2-. They are working to expand this test to other types of situations (for instance, if 1-2 nodes are positive).

Anyway, the scoring is on a 100 point scale, and looks like this:

<18: Low risk of recurrence (probably don’t need chemo, risks of chemo outweigh benefits)

18-30: Medium risk of recurrence (might do chemo)

>30: High risk of recurrence (will most likely do chemo)

This scoring also takes into consideration that the patient will be on Tamoxifen, or some other form of hormonal therapy after active treatment.  

Okay, so now you have all of the info I had going into these appointments. I head into my surgeon's office and she decides I don't need the steristrips anymore. The scars are healing nicely and she tells me that I can wear the compression band less frequently until I no longer need it. Awesome!

Then she tells me that she has my Oncotype Score. She is excited to tell me, and so I know it must be good news. Good news, it is. The score is 16! Sweet 16! I've never been so happy to get such a low number on a test. Now, she tells me that I still need to prepare for chemo. As I said in the last post, I already knew this, but now it was becoming more real. She said the MO will most likely want it on the treatment plan because of my age and tumor size. I had already decided I'd do it if it were even an option, but now, faced with it, I wonder. Do I, don't I? 

I leave her office happy with the information she's shared. It is such good news. 

Then a couple hours later, I am in my MO's office. I tell her I know the score. Awwww, she is happy I know, but was also excited to tell me. But, we still do the happy dance together, because I'm still happy about it. Then we talk treatment. The recommendation is four rounds of what is called TC. Stands for Taxotere and Cyclophosphamide. It is given on a three week schedule, so infusion is day one, then the next infusion is on day 21, for four infusions. I admit, I hmmm'd and hawww'd for a hot minute. Then practically smacked myself back to reality. I had already made the decision. If it is a maybe, it's a yes. 

Look at all that hair in the wind!!

Look at all that hair in the wind!!

So, yes to chemo! 

Now, Of course, I asked the surgeon and my MO about my hair. The surgeon and I had a good laugh over the fact that I was totally fine with no reconstruction, but my hair... now that I really cared about saving. Turns out there is a way to try and save it. It is called cold capping, and I will go into more detail in another post. Basically... it's a very cold cap (-28 Celsius) that you wear while getting chemo.

Yes, I'm interested. 

So it begins. I get the cold caps set-up, first chemo is set for June 30th and now I go to the pharmacy to load up on the pre-meds I need. I also scour resources to make sure I have everything I need to be prepared for chemo (hahahaha.... and chemo says to that... 'well bless your heart, isn't that sweet.'). 

But, today, I get to be happy. Happy for a low score. Happy that chemo is an insurance policy. Happy that I get to have another Philz before heading back to SLO! :-) 

June 30th is right around the corner.

Another good appointment... another Philz in my hand!&nbsp;

Another good appointment... another Philz in my hand! 

Walking & Pathology & Choices.

First walk and the Jacaranda trees in bloom!

First walk and the Jacaranda trees in bloom!

The first walk outside after surgery was hard and wonderful all at the same time. Only four days after surgery, I found myself on the streets of Brentwood, aiming to make it to the corner of the block. I made it with slow, focused and small steps, but I made it. It was hard to believe that just one week before I had been hiking to the top of one of our local peaks! 

The great thing about the timing is that it coincided with the blooming of Jacarandas trees, my favorite! My walks were full of purple blooms, and they were lovely. Every day I would go for a walk, and try and go a little longer each time. 

One thing about a mastectomy is that you get these things called, drains, and they are exactly what you think they are. They help the surgical area drain and they are not painful, but very uncomfortable. Especially when you move. They also stick out, so make it hard to wear anything but very baggy clothing. Luckily I found cami's that are made for this... they have pockets inside to hold the drains and they were a godsend. 

Eight days after surgery I had my follow-up appointment. Thankfully my drains were producing low levels of fluid so the drains came out! They just snip the stitch and take them out right in the office. Turns out there are very long, skinny sponges on the end of the tubes. Now I understand why they are so uncomfortable! It felt so great to get them out, like a new freedom! 

After the drains came out, we went through the pathology report. Here is where you learn that the MRI is not always correct in its sizing, in either direction. It had said one lymph node was over cm (which can mean cancer is present) and it also said my tumor was 4cm. Well, here is what was found to be true - Main tumor: 6cm (!!), lymph nodes were all normal size, and NO CANCER cells present in any lymph nodes that were taken out (four on the tumor side). As soon as she said that the lymph nodes were clear I got so happy I started to cry and I did my best to hear what she said after this (this is why they tell you to bring another person with you!). 

She continued on: The tumor is Estrogen Positive (ER+), Progesterone Positive (PR+), HER2 Negative (HER2-)... 6cm... no lymph node involvement... no other lesions found in the breast with the tumor (right side) and no lesions of any kind in the left breast. The tumor was on the larger side, grade 2 (on a scale of 3) and they got clean margins... 10mm (1cm), which is amazing. Clean margins are 1mm or so, there is some debate, but my margins were huge! 

She told me to be ready to talk about chemo. Originally it was thought that I may go straight to radiation. But, because of the tumor's size, and my younger age (42), I was being told that chemo would be on the table. It might be a choice, depending on my Oncotype score (my what!?). This is a score that predicts recurrence risk in women with tumors that are ER+, and who have no lymph node involvement (this is starting to change, as well, as they do more studies on women with some lymph node involvement). 

Philz after meeting with surgeon &amp; a great pathology report!

Philz after meeting with surgeon & a great pathology report!

We head straight to Philz to celebrate because the overall news is so good! Large tumor that hadn't really done anything! I could finally go in public with no drains hanging everywhere, and a good cup of coffee sounded wonderful. Walking down the street to Philz felt so amazing, even though I was slower and not very mobile with my arms or chest area, I felt so free! 

A few days after this appointment we met with the Medical Oncologist (MO) to go through the options. It was June 5th. When I see her, she confirms that we should get the Oncotype Score ordered, see what the result is (about a two week wait time) and then make the final call. She does tell me to prepare myself for chemo. Even with a low score the recommendation may be a 'light' round of chemo given the tumor size and my age.

I had an Oncotype score on order, and if chemo was recommended, I was all-in. Chemo isn't something you can choose to do later, you must do it within a certain time frame after surgery, so mentally, I was gearing up to say, "yes," to chemo. It felt like the odds of chemo not happening were going to be very low. 

Now to wait for a the score... June 20th was the next appointment, and that would be the day that decisions would be made. Until then, I'll drink some Philz, head back to the Central Coast and head back to work.

Philz after the meeting with the MO.

Philz after the meeting with the MO.