Well, it's been a busy 5 months since my last post. Hope you're ready for an overload of information!
Treatment:
In my last post, I was just a few days away from finishing radiation, and holy hell am I glad to be done with that. As with most things, it (my radiation burn) got worse before it got better.
As you can see, it started to peel (as do most burns) and then turn to tan. Part of me was like, yay! tan! but it looked awkward because it was soooo tan in the radiation field and the rest of me was so white. Oh well, can't win 'em all! I saw my radiologist a month after I had finished all my sessions and he said I was healing perfectly, which was really exciting to hear, and I don't have to go back and see him for 6 months!
Hair:
One of the harder parts of losing my hair wasn't just the hair on my head, but also my lashes and eyebrows. Because I am impatient, I decided to get my brows micro bladed, which is a semi-permanent tattoo that copies the strokes of your natural hair pattern. Look at my before and after!
Seriously life changing!
If you know me well, you know I've never been a fan of dressing up in costumes. As I never plan on having my hair this short again, I felt like I needed to use the opportunity to my advantage and dress like Eleven from Stranger Things.
Basically twins, right?!
December 2017
So, I basically have a Jew fro now! Very curly, especially on the back of my head. While some (okay, a lot of) people think I should just rock the short hair, I'm just not quite there yet. Probably in a few months, though :) Plus, I just got a new wig (yes, I have a problem) so I am having fun with this new one!
Sis is having fun with her purple hair, too!
Biopsy:
In my last post, I mentioned that they found a new mass on my left (non-cancerous) side and that i'd be needing a biopsy.
Some big ass needles they are about to stab me with
What the mass looked like on the scan!
The good news is that the biopsy came back non-cancerous!
All is good! My surgeon will remove it when I get my reconstruction, and so it is just kind of chillin right now haha.
Zejula:
In October, I started on a drug called Zejula, which is essentially chemo in pill form. The good news is that this is targeted therapy, meaning it only attacks the cancer cells, as opposed to all rapidly dividing cells like IV chemo does (hence the hair loss, etc). So, you might be asking yourself, "then why don't all cancer patients just take those?!" which is a more than valid question! However...
- This drug is BRAND NEW. It got approved by the FDA in March of 2017 (yes, you read that right!)
- Technically, it is currently only FDA approved to treat ovarian, fallopian tube, and peritoneal cancers....but it is in its final stages of trials for treating breast cancer, so I was given approval to be on it
- It is meant for the maintenance treatment of recurrent cancer (meaning it is taken either if your cancer has come back after you've already undergone treatment, OR to begin taking after finishing treatment for an extended period to make sure the cancer does not come back. I obviously fall under this category!)
Although the cost for me was completely covered, the monthly cost for this drug is $15,000.
My face when they told me the price. Like, what is in these pills?! The fountain of youth?! Good lord.
You either take 100, 200, or 300 mg each day (each pill is 100 mg). Because the drug is so new, there is a very strict protocol for how to take it. IV chemo dosage is based primarily on your height and weight, whereas with Zejula, it doesn't matter if you are 30 pounds or 300 pounds, you HAVE to start on the 300mg dosage. This is one of those times where I was considered lucky to be so young with such aggressive cancer, because even though I am at a relatively low weight, they thought I would tolerate the drug well.
And, initially, I did tolerate it well! The biggest side effects that I had at the beginning were fatigue (ugh) and nausea, so my anti-nausea meds became my best friend once again. They recommend that you take Zejula right before you go to bed so that you can sleep through most of the nausea (which is true) but then I would still have some after waking up, so for a bit I got to see what it was like to have morning sickness! Let me tell ya, it's not fun. But, overall, I was doing alright!
After a couple of weeks, I started to notice I was beginning to bruise easily. As I was getting weekly labs done, my platelets, (in charge of clotting blood) were down to 140,000 at that point, where a normal range is 150,000-450,000, so overall there was no urgent concern. Within another week, however....I TURNED IN TO THIS:
So, yes, super attractive, I know. My oncologist called me on a Friday morning at 5:30 AM and told me that my platelets had dropped to 16,000--which is dangerously low--and I needed to go to the ER basically right that second.
Low platelets is a common side effect of the Zejula, but we all know I like to go above and beyond. So my platelets on Thursday were 16,000 and they ran more labs when I got to the ER on Friday, and I got down to 12,000. When I was admitted, they asked if I was in any pain, and I said I've had a bad headache the past few days, but other than that was fine. Because my platelets were so low, the doctor was worried that my head was hurting because my brain was bleeding and wanted me to get a CT scan of my head right away.
To be anti-climatic, brain scan came back clear. Yay! But, since I was sooo low, they wanted to keep me overnight so I could get transfusions and I was released the next morning because my new labs showed I was at 50,000! My oncologist had come to the hospital to check up on me (he is literally the best) and told me to stop taking Zejula until I was back at 75,000 and wanted me to get labs done again on Monday and Wednesday. On Monday, they were back down to 36,000 (ugh) and on Wednesday afternoon they were at 17,000, which I found out on Thursday morning when Kalmadi (oncologist) called me and told me to go get a transfusion after school, but asked if I had any other symptoms. I told him my bruising was getting worse, and I had had a nose bleed the day before and my gums were bleeding non-stop and I was once again ordered back to the ER!
New labs from the ER showed my platelets were now at 11,000 (love setting new records!), so I had another transfusion, and because my head was still killing me, I had another CT done, but it still was clean, and after about 10 hours I was finally discharged at 11 PM and went back to work the next day :)
I had labs done every 2 days and my counts were slowly improving, but I was feeling worse day by day. My headache had now turned in to a full blown migrane, and I had 0 energy
....literally took a nap under my desk at school during my prep period (#teacherlife) and would get winded walking up stairs or even just down the hallway. Turns out this was because even though my platelets were returning to normal, my hemoglobin (hgb), which is part of the red blood cell that carries oxygen throughout your body, was declining. Normal range for hgb in women is between 11 and 16, and mine dropped from 9.6 to 7.1 within a matter of days.
So, I am super frustrated at this point. And while I am used to feeling like crap, I hit a new low and had a huge breakdown and cried to my wonderful sissy Layne about how much pain my head was giving me. I'd like to think I'm really not a complainer but I was on the verge of jumping off a cliff if I didn't get some relief soon. I called Kalmadi and he prescribed me some pain meds and after 2 days they still had done nothing for me so I called him back and he told me to go to my second home aka the ER! This time, he wanted them to do an MRI of my brain (which is different than the other 2 scans I had the 2 weeks prior) just to see if there was something we were missing. So, they did an MRI of the structure of my brain as a whole and a second MRI of the vessels of my brain. aye aye aye, right?! While waiting for the results, the doc gave me some IV morphine and as soon as it was administered I immediately was like
aaaaand then I fell asleep about 30 seconds after that.
Both scans came back normal, so I was referred to a neurologist in hopes they could give me some answers. Long story short, I started on a daily medication (Propranolol) to hopefully keep any headaches and migrants away, and another (Imatrex) to take in case I get hit with a migraine. Since beginning Propranolol, I feel like a brand new girl! My daily pain is nearly non-existent and I could not be happier about it.
The week after, I had an infusion of red blood cells to try to help boost my hgb since it was so low and just to overall help me feel better (which it did), and so even though this one was scheduled, it technically marked my 4th consecutive visit to the hospital, and I am seriously considering getting punch cards made, haha.
At this point, all of my counts are starting to stabilize, and after 6 weeks of monitoring my counts, I was given the go-ahead to start back on 100 mg of Zejula. After 2 weeks of normal counts, I've been bumped up to 200 mg. Besides fatigue, I am doing very well on them. Kalmadi said I am ready to start back on the 300 mg, but as I am getting my reconstruction so soon, we are going to wait until a few weeks after I've recovered to bump me up, as we don't want anything to interfere with surgery! The plan is to keep me on the Zejula for a year (so finish it in November 2018) to make sure this motherfucking cancer is gone for good.
Port:
After 14 months, I FINALLY got my port taken out! This was a huge step for me. Before my mastectomy, I had asked Dr. Kalmadi if I could get it taken out during that surgery, and he replied, "No, we should keep it in...just in case." Sure enough, more cancer was found during the mastectomy and called for more chemo. BUT NOWWWWW.... he was like, "yep, let's get rid of it!" and confirming that I am nearing the end of this chapter of my life. So although it was a simple surgery, it was a milestone for me emotionally.
Reconstruction:
March 14, are you here yet? That is the day I get boobs!
I'll probably write a full post about this after surgery, so stay tuned!
Insurance:
Since my diagnosis, the total sum of my treatments have come to just under 500k, which will be surpassed once I have my reconstruction.
Lesson learned: cancer is expensive. Thank you, health insurance!
Travel:
Because this initially started out as my travel blog and not a cancer blog, I vote we get it back to that! :)
If you saw my post from last week, then you already know that I was offered a fellowship to teach in Ghana next summer! Where is Ghana, you ask?!
Shirt 1 link!
Red or Grey V-neck (unisex)
Grey or White Crew Neck (back of shirt is same, but front has Ghana flag)
As always, thank you thank you thank you for your love and support! If you actually read this far...bless you.
xoxo,
Kristen
