Chemotherapy week six: “your white blood cell count is getting low, it’s time for your white blood cell booster shots.” Neupogen^® (filgrastim) is a drug that has been used successfully for cancer patients to stimulate the growth of the white blood cells, making patients less vulnerable to infections. -thanks google

So, what does this mean for me? Every night for three days after chemotherapy I was to inject a Neupogen shot into my belly. Good thing I was used to this from all the injections from my egg retrieval process. These were a bit different though. Side effects from this medication were body aches, headaches, and stiff joints especially the low back and hips. Some advice that I got from my oncologist was to take a Claritin with these shots to help with the side effects… and it did seem to help! Or I just didn’t really notice the side effects. Not sure, but I did take Claritin because why not?

I ended up having to take these injections for the duration of my treatment. Obtaining these medications was an entirely different experience/pain in the ass. These medications need to be refrigerated and delivered to your house. Not only do you need to know exactly when they are being delivered but you have to make sure you are home at a decent time so they don’t get too warm or too cold. AND THEY ARE FRICKEN EXPENSIVE, so you don’t want to mess it up! After getting the prescription and talking to 3 different pharmacists, the medications were delivered just in time to start the injections. Injection day 1, not bad. Day 2, not bad, Day 3… I can do this.

My actual chemotherapy session went smoothly, spent with my best friend Sarah. We hung out and caught up just like a normal coffee date, and I remember when I asked her to take a picture with me she said, “we never take photos and this is when you want to take a picture!?” haha! I wanted to document every person who stood (or sat) by my side through this experience… and I am glad I did. Looking back now, I had and still do have an army of people by my side. Unbelievable ♥️

Chemo number five was spent with my Dad. Another “coffee date” is what I started to call chemotherapy sessions. A place of positivity and healing. We sat, laughed, chatted away and boom soon enough chemo number five, done.

Side effects noticed after week 5 were heart burn and continued constipation. Super fun. I noticed the heart burn when I went up to the mountain to go night skiing again. I was walking up from the car to the lodge and felt like my jaw and neck were on fire. My heart was racing and I became super flushed, thought I was going to pass out. I sat for a minute and gathered myself. Weird, heart burn sucks. I had never had it before but it seemed like an extreme case. I was able to pass the feeling and still night ski but the heart burn never seemed to fully diminish for the duration of my treatment.

On the other hand my appetite was improving and I had a good schedule for my sleep. I had to take Pepcid every day for heart burn and lorazepam the day of and day after chemo to help with sleep. Let me tell you… lorazepam does the trick! However, can be very addictive as it is a Benzodiazepine… so the rest of the week I was working with melatonin. I was also maxed out on stool softeners and laxatives for the duration of treatment for the constipation. My medicine cabinet looked very similar to a small pharmacy. Things were running smoothly, until week number 6…

The thought of losing all of my hair was worse than it actually was. I first noticed the hair loss while I was training another occupational therapist, Natalie. Since I do home health therapy, we were in my car and as we are sitting there talking about OT stuff…my hair started to tickle my neck, back, in between the boobs… all over. I reached back to pull it out of my face and noticed the large clumps in my hand. Well this is awkward… sorry Natalie. It then started to come out more and more, especially in the shower. I would take the clumps of hair and try to stick them to the wall of the shower so it didn’t go down the drain, but it was too heavy and would slump right off, so I would throw the hair out of the shower onto the floor. Yup, the nitty gritty of chemo. I’m not leaving anything out.

My goal was to donate my hair as soon as I started to lose it. I had my sister meet me at my grandmother’s house and we chopped it off to about my shoulders. 13 inches donated to Locks of Love. It was the thinnest, little rat tail tied in about 3 black pony tails, but better than nothing right? This short hairdo lasted about 2 weeks before I needed to start wearing beanies and hats due to the bald spots on the back of my head. Luckily it was winter time. Beanie season baby! Another plus, I wasn’t just losing hair on my head… I didn’t have to shave my legs or armpits for months! Blessing in disguise? Maybe. I attended a group workout shortly after cutting my hair. During the workout I was scooping hair off of the hard word floor in between sets. Well that’s embarrassing, however not as embarrassing as losing the dang push up contest at the end of the workout! Lost by 4 push ups… but who is counting.

As I chipped away at my chemotherapy sessions, I continue to work and workout. Keeping my life as normal as possible seemed to help. It was almost as if I was pretending that nothing was going on. I would work Monday, Tuesday, Wednesday and then have my chemotherapy on Thursdays, then back to work for a half day on Friday. Working out every morning and hanging out with friends and family on the weekends. On the days I woke up feeling groggy or gross, I would go workout and feel 100% better afterwards. I think lifting weights and sweating kept the chemotherapy moving through and out of my body faster. Chemotherapy does have a cumulative effect that does start to wear you down over time. However, as I finished chemo #4 with my friend Ashley by my side I felt like I could conquer this.

Side effects I started to notice were decreased appetite and dry mouth. I started to lose weight and nothing sounded good. At one point I tried to eat bacon and eggs… and started gagging on my food. Not like me AT ALL. And of all things BACON. My favorite. This seemed to last about a week or two before starting to improve.

Other side effects… constipation. My lord, I have never had constipation my entire life and let me tell you what.. not fun. CCNW nurses tell you that you could have diarrhea or constipation, so I had medications for both. I was maxed out on stool softeners and laxatives and was barely having regular bowel movements. Maybe too much information for you all, BUT this was reality. I’m not here to tip toe around the nitty gritty. I’m here to tell you how it really was.

The week after Chemo #4 … started with the hair loss.

After my rash begin to diminish they decided to go through with chemo #3, however no more immunotherapy for me. My mom and sister joined me for this chemo infusion. Since I could only have 2 visitors and my husband was there, they had to rotate and take turns. So my mom was there first. This was hard for her because she knew how it felt to sit in that chemo chair herself. However we turned it into a great little coffee date once again, laughed and chatted. Then my sister joined and my mom left.

Chemotherapy infusions are an odd thing. You walk into this room, full of recliner chairs and IV poles. Especially as a 28 year old, you feel as if you don’t belong there. A room full of 60-80 year olds for the most part. There is a weird feeling you get just walking in the room. As my sister walked in the room, you could see it on her face. She definitely felt that feeling- my little sister does not belong here.

BUT once again, we turned it around. Had our little coffee date, chatted about life and boom another round of chemo done!

I was feeling so good after some chemo days with a boost of energy because of the steroids they give you prior to chemo. So… what do you do when you have a bunch of energy and it’s December in Spokane? Night skiing.

We gathered up a few friends and hit the mountain. With the precautions I was on for high risk of bleeding I had to take it easy, but we had a great time!

Chemo #3 done, NEXT

The evening of Christmas Day, as we were finishing up dinner and about to head home for the night… my feet started to itch. BAD. I took off my socks and began to notice a rash starting to form on my feet and lower legs. Maybe a heat rash? Not sure. Decided to head home and by the time we got home (about 45 minutes later) the rash had spread to my low back.

The next morning I woke to the rash covering my entire body. I took two Benadryl and took a short nap. When I woke up, the rash had spread to my face. I called the on-call doctor at Cancer Care Northwest because it was a holiday for Christmas observed. The doctor recommended that I go to the emergency room. So here we go to the ER on the day after a holiday…

I had to wear an N95 mask to prevent getting another illness while I was there. I was hot, itchy all over and the wait time… unknown. We ended up waiting for 10 hours. Sitting in the waiting room watching people come in and out. Coughs, crying, noise. So much noise. We sat in the only two chairs available which ended up being next to this empty chair that had shit in it. Yup, literal shit. Every time someone came up to sit in the chair we had to tell them… “don’t sit there” … why? “Because there is shit in that chair.” We probably said it over 20 times throughout the day. Then a homeless guy walked in and as we were telling him not to sit in the chair, he sat right in the chair, straight in the shit. He did not care one bit.

We finally got to see a doctor, who loaded me up with antihistamines, epinephrine and steroids. Nothing helped. They decided to send me home with a prescription for prednisone and some anti-itch cream. Basically miserable at this point, we went home and I could barely stand the itching anymore. I wanted to scrape my hands and feet off. I had to take a sleeping pill to fall asleep and in the morning…No change. After several days of prednisone, the rash finally decided to ease up and within the week it was beginning to diminish.

So part of my treatment plan was immunotherapy, specifically Keytruda. It was to be administered during my chemotherapy to treatments every third infusion, beginning with the first infusion. This rash was assumed to be caused by Keytruda, however did not appear until 2 weeks after the administration of the drug. Crazy.

Crazy and Miserable.

Alright, round 2. Let’s do this.

Lab, doctor’s appointment and chemotherapy. My friend Morgan of over 10 years joined me and brought me a coffee. We chatted for a couple hours during my infusion, just like a good ol’ coffee date. Went by so fast and got to catch up!

Side effects: no symptoms during the day, however I was unable to fall asleep at night even after taking 2 melatonin. I had to sleep most of the next day, but still had to see a couple of patients for work. Made it through the day and was very groggy and irritable.

I kept a symptoms journal throughout chemo to keep tabs on my signs/symptoms and what medications I was taking. It was helpful when I had my doctor’s appointments and to look back on. Looking back on it now, over a year later is somewhat traumatic.

2 days after chemo, with a good night sleep, I was able to go snow boarding! It was Christmas Eve, needed Pepcid for minor heart burn, but had a great day with good energy. Then Christmas Day the rash began …

Alright. Let’s get back to chemotherapy and the side effects that I began to notice after my first session.

None.

I felt like a science experiment. Ok, let’s inject all this poison and wait and see how you do! After the first chemotherapy I was fatigued after a long day of being at the doctor, however felt that was pretty normal for anyone. We left chemotherapy and got to go meet our friend’s newest member of the family, Nyah. She was born 3 days prior. We hung out for an hour or so and went home. I rinsed my mouth out with some salt water solution to prevent mouth sores (as recommended by the oncologist), took my glutamine to prevent neuropathy and went to bed. I had a hard time falling asleep due to the steroids they give you prior to starting chemotherapy, but did not notice much else. Waiting for something to hit, nothing. Alright, maybe this won’t be so bad…

In the midst of all this chaos, I received news that my genetic test results came back. At the time, I was so overwhelmed with getting through the egg retrieval and getting started with chemo I don’t think I realized how important these results actually were. I scheduled an appointment with a specialist at CCNW to review the results. This was an hour long appointment… then I realized how important this may be.

BRCA 1 mutation: positive

NTHL1: carrier

What the hell is that? What does it mean? What do I need to do about it?

BRCA (breast cancer gene) 1 mutation is a genetic mutation that can be passed down from one or both parents. It can be passed down without any signs or symptoms of either parent having a genetic mutation. It can also be “dormant” and not show up on a genetic test. It could have randomly sparked up in me without being passed down from one of my parents (however this is VERY rare). So, what to do now? Have my parents be tested and my 2 sisters. Depending on their results would determine if my nieces, nephews, cousins, grandparents or aunts and uncles should be tested. So the entire family tree is now involved. Crazy.

One of my sisters was tested pretty soon after. Negative. Next up, Daddo. Positive.

Now, like I have mentioned I haven’t had much emotion throughout this process and these tests were just another thing that needed to be done right? Wrong. When my dad called me to tell me he got his test results back, he could barely get it out. He felt guilty for passing this gene on to me. His daughter. However, there is no way he could have known! I told him that yes, you may have given me this gene, but you also gave me all of my other genes who have made me who I am. I would never take that back.

These genetic tests take time and money believe it or not! $600+ for my sister to get a test done that could possibly save her life. Ridiculous. And it takes months to get results! So here we are, over a year later. Still chipping away at getting grandparents and other family members tested to make sure no one else is at risk.

So what are the risks:

Female: up to 51% risk of breast cancer and up to 23% risk of ovarian cancer with an elevated risk of pancreatic cancer

Male: 1.2% increased risk of breast cancer, 9% risk of prostate cancer and an elevated risk of pancreatic cancer

Now, going forward when my husband and I want to have children, our kids have a 50% + chance of getting this gene mutation. BUT, remember that egg retrieval I did? I guess they can test the embryos for the gene mutation before implantation. This also means, that instead of trying naturally for a child, we would have to follow through with IVF. Being almost a year out from chemotherapy, they are recommending we wait another year before starting this process. So more to come on that.

So all while the chemo treatments role on and the bills rack up, my amazing sister in law created a GoFundMe to support my husband and I with all these medical bills that were about to be rolling in. I was very against the idea of fundraising at all at the very start of this. I have always worked for everything that I have and the free handout was something I couldn’t wrap my head around. However, after paying the $7,000 to SRM for the egg retrieval and not even starting chemotherapy yet, I was overwhelmed. My husband and I had recently bought 10 acres and built a shop. We were living in a 5th wheel trailer inside the shop while we saved up money to build a house. Then I got diagnosed… how in the hell are we supposed to build a house when I am about to have thousands of dollars in medical bills?

This was hard for me, but I accepted the help because I knew we needed it. My closest family and friends told me, “so many people want to help you and don’t know how, this is a way people can show their support.” And I was not only amazed by the amount of people who donated but humbled by how much we raised in such a short amount of time. Close friends, family and people I have never even met were donating. Humbling. I have never been so grateful.

So to give you an idea of how much cancer treatment costs, these are the rough estimates:

Egg retrieval: $7,000

Max out of pocket for 2022: $6,200

Max out of pocket for 2023: $6,200

Medications not covered by insurance: $2,000

Total: $21,400

GoFundMe raised over $21,000 nearly covering all of it.

Obviously this is a lifelong battle of continued screens and eventually completing the second half of the IVF process costing more later on, however it was some serious relief knowing we will still be able to build a house in the near future.

So I am going to take a minute to say THANK YOU to anyone who donated and a huge thank you to Jamie, my sister in law, the most selfless person I have ever met, that was kind enough to go above and beyond to help me through this crazy time.