Monday, May 25, 2020

Summer after treatment

I did my best to enjoy the rest of the summer after I was done with treatment. Josh and I did our usual of going to his dads house for the 4th of July. I usually like to spend the day at the beach, but I wasn't feeling up to even wearing shorts.  I was still bloated from all the treatment and didn't really feel all that great about myself.  Also that weekend, his cousin was having a bachelor/bachelorette party that we went to.


Later in July I went to the Oregon Coast with my family. We stayed in a house with my dad, step mom, step sister and her boys, my brother, and my oldest cousin and his family.  It was a nice enough house. It had a lot of steps, which normally wouldn't bother me at all. I enjoy that kind of exercise. But this time, I wasn't fully recovered from treatment so the steps were kinda hard for me. They were also small steps. And I mean that by the steps themselves were only about as big as my feet and I have small feet.  I told myself to be careful, I just knew I would fall down them.  And I did. Really hard on my tailbone. I gave everyone a scare because I passed out after for a few seconds. It probably wouldn't have been as big a deal if I hadn't just finished treatment a month prior.


The rest of the trip was fun. We spent a lot of time at the beach.  I probably should have waited to go on a vacation so soon after treatment, but I didn't want to put anymore of my life on hold. Here are a few pictures from that trip:






















In August, Josh and I took his little brother Cody to the jet car races. We went the summer before and it was fun. I love that kind of stuff.  His dad and cousin showed up later to join us.  I have some pictures from that as well:














Friday, May 22, 2020

Getting through it all

I had taken a leave of absence from work the last 4 weeks of treatment and one extra week after my last treatment. I am still incredibly grateful for the company I work for. When I was first diagnosed, I didn't tell a lot of people what was going on. I am pretty introverted, and I also didn't want to be treated any different.  After learning all I would have to go through, I knew there was going to be a time when I would need to take time off work.  Not just because I thought I wasn't going to feel good, but because with the schedule I had to do my treatment. I had Chemo on Mondays, external radiation Monday through Friday. And then in week 4 I had brachytherapy on Fridays. So it made it difficult to work full time.


I wasn't sure how I was going to manage taking time off to get through all this. I started looking into what kind of financial help I could get. There wasn't much for living in Idaho. If I had lived in Washington, there were quite a few.  Then the most amazing thing happened. My amazing boss' had put out the message that if anyone had wanted to, they could donate sick time to a fellow co-worker that was in need. They had only done this one time before, for a woman going through breast cancer.  It brought tears to my eyes. At that time, I let everyone know it was me, and how incredibly thankful I was for that. I still don't know how to repay them. They helped me get through this awful time.


I was donated a total of 11 weeks, but I only used 5. I felt I only needed to get through the remainder of treatment with a week after my last brachy just to try to feel a little normal before coming back.  It was nice when I came back, but also hard. I probably should have used a few more weeks to recover, but I managed.



Monday, May 18, 2020

Brachytherapy

I want to go into more details about brachytherapy.  The first one I had, I got to go under anesthesia and while that took a long time to get through, I didn't feel any pain.  The four I had after that, I had to take a anti anxiety pill a half hour before I got to my appointment, and once I was there when I got called back, they set me up with an IV and gave me some morphine for the pain. And it was a lot more painful that I had expected. Even having the lorazepam and the morphine, it was probably the most painful thing I've gone through so far in my life. I'm not sure what to compare the pain to, but it was like this sharp, stabbing pain when the doctor would insert the rods.

I'm not sure what the rods looked like, I didn't want to look. I have it in my head that if I see it, it will hurt more. I never look anytime I'm getting blood drawn or an Iv put in.  I'm not going to put a picture of the brachytherapy in this post as anytime I've googled it, its pretty much a picture that doesn't seem appropriate to post.




The last four brachytherapy still took a while. I would say we were at the doctors office from about 12:30pm to about 3:30-4:00. What took so long was each time after I would get the rods put in, the doctor would have to come up with a plan to perfectly administer the radiation. They would scan me in a ct machine and see what the tumor looked like then decide how to set up the radiation.


I had my very last treatment on June 14, 2019. After that I was told that I would not get my post treatment pet scan until September because there was a lot of inflammation in my body from the treatment and it would be better to wait so we didn't get any false images back.




So I tried to enjoy the summer as best as I could. I still had a lot of symptoms hang on for a while after treatment was done. The biggest was the fatigue. The part of the fatigue I didn't realize would happen was whole body fatigue.  I had trouble going up stairs and climbing small hills. It was like being extremely out of shape.  It literally took the breath out of me. It was one of the weirdest things I ever experienced. I still have a little trouble with that now, but not as extreme.



Tuesday, April 28, 2020

My radiation experience

My radiation experience was, at first, easier than the chemo.  I had both external and internal radiation. I did the external radiation 5 days a week. The first week  Dr. Wagner had me set up where I was laying on my back with molds of my legs in a certain position so I wouldn't move while the machine went around me. While I had this done, I had to have a full bladder and I also had to pull down my pants and put a sheet over my pelvis so the machine could get a better shot at locating the tumor.  I also had three very small tattoos that helped the machine line up to where they needed it to be. The tattoos are just tiny dots and I got them the day I had the simulation.

I didn't stay on my back for very long. Dr. Wagner decided to have me move on my belly because he was worried that laying on my back with the machine for too long would eventually burn a whole through my vaginal wall into my colon and that would not be good. If that were to happen, I would probably end up with a ostomy bag. So he had me move to my belly to get a better shot at just hitting the tumor. This was difficult for me because for one, I had to have a full bladder and the pad I laid on had open squares and where I laid put pressure on my bladder. I also was dealing with nausea and heartburn so that made it difficult.

I had complained the first time I did it and the radiation tech told me that there were 80 year old women that had breast cancer and had to lay in that position to receive their treatment. So I put it in my mind that if they can do it, then so can I. I never complained again after that. I just sucked it up and did it.

I had both chemo and radiation for 4 weeks before I had my first internal radiation. That was a totally different experience than the external radiation. My first brachytherapy was May 15.  For my first one, I would have to be put under anesthesia.  I also had a spinal epidural and had my legs numbed. The reason for this is because they had to insert a sleeve that would hold the rods when they would be inserted. The procedure went well. I think it took about an hour, and then I was wheeled over to the cancer center when I woke up so that I could get my radiation.

I got wheeled into the room that had a ct machine that helps the doctor pinpoint exactly where the tumor is and they come up with a plan to run the radiation.  The whole process takes a couple of hours. This went good as well. I pretty much was in and out of sleep waiting for it to be done.  When I was done getting the radiation, we still had to wait to go home because the anesthesiologist gave me too much of the numbing stuff and my legs were still numb.  I also got sick as soon as I sat up. My day started at 12 and we didn't get to go home until 6:30 that night.  It was quite the long day. But we finally got to go home.  I just rested when we got home all weekend.


Here is a picture of a radiation machine. Not the exact same one I had, but very similar. The machine takes about 10-15 Minutes and would go around me.




Friday, April 24, 2020

My Chemotherapy experience

I had six rounds of chemotherapy. The chemo that I was on was called Cisplatin. I was told that this chemo I would not lose my hair. That seems like such a trivial thing, but it's a big deal. When you think of chemotherapy, most people lose their hair, to learn that there are different kinds out there and not all of them make your hair fall out was something I didn't know.

The first one was relaxing kind of.  I just went and everyone was great. The Medical Assistant Dan was super nice. He was the one that called everyone back for their treatment. So he called me back and set me up at the chair I would be sitting in. It was pretty comfortable and also big. I felt like a little kid in the chair.

As I was getting comfortable waiting for my turn to be hooked up, I was just enjoying the view. I wish I had taken a picture of the landscape we got to look at. It was pretty. They had two small waterfalls and it was pretty relaxing to look at.

The nurse came and explained to me how the day would go. I would get an iv of anti nausea medications first then I would get my chemo then I would get a flush of saline after chemo. It would be a total of 3 hours to go through.

When they administer the chemotherapy, the nurses have to suite up and really protect themselves so they don't get any on themselves.  Chemo can be really dangerous to anyone who doesn't need it. The day went pretty quickly. It wasn't too bad at all.

My doctor had prescribed me some steroids to take the three days after chemo, some anti nausea medications and some anti anxiety medications to take at night since the steroids keep you awake. I went from barely taking any medications, to taking a whole lot.

I started feeling a little nauseous a few days after chemo, so I would just eat salty crackers. The one thing I didn't think would happen, but they told me it could, was getting a nasty metallic taste in my mouth. The number of things they said could happen, the only things I experienced were nausea and nasty taste. The side effects that they said to look out for were nausea, metallic taste, ringing in my ears, mouth sores, fatigue, constipation and diarrhea.

I feel like I lucked out, as I only had nausea, fatigue and the yucky metallic taste.  Overall I did pretty well. I did have a rough time towards the end making sure I was hydrated. The nurses had a hard time getting an iv started in my veins towards the end of treatment. Had I known this would happen, I would have had them do a port for me instead of getting an iv each week.


Here are all my pictures from each chemotherapy session.







Thursday, April 16, 2020

The first day of treatment

My first treatment day was April 22, 2019.  I had to get my blood drawn first, then go downstairs and do my radiation then go back upstairs and get hooked up for chemo.  It was all surreal. Before this all started I was asked if I wanted to get a port put in before I started treatment. I decided not to because I thought that I would only be getting 6 rounds of chemo so that should only mean 6 IV's done. But I never accounted for needing an IV every time I had brachytherapy. If I had to do it over again I probably would have gotten the port.  My veins were not happy with me towards the end of treatment.

The radiation went fast. I had to have a full bladder every time I had radiation to hopefully prevent a hole from being burnt through my vaginal wall to my colon. Most of the time that wasn't too bad, but I had a few times when holding it was very tough.  The first week of radiation I got to lay on my back while the machine went around me. Toward the end of the week though Dr. Wagner decided it would be more beneficial to have me lay on my stomach as that was a more direct shot and would better prevent the radiation from burning a hole.

I was not happy at first with this change as it was not comfortable at all and I complained to the radiation tech that first time. And she told me that there are 80 year old women with breast cancer that have to lay in that same position to receive their treatment and after that I never complained again. She put me in my place and I'm thankful she did. I thought if they can do it, then I most definitely can.

My first chemo I went by myself. I wanted it that way. I wanted to know exactly what to expect before I had anyone go with me.  It went as well as it could. I was set up in a comfortable chair. I had brought with me a journal to doodle in, some snacks, my little Miss Piggy that I have had since I was 5. 36 years old and still have my childhood security blanket. I have no shame! lol I had a wonderful view to look at. Outside they have it landscaped with two small waterfalls and it was spring so everything was blooming and pretty. It was a nice sunny day that day as well.

There was a little old lady that volunteers once a week that was so sweet. She was there to keep people company and get you something to drink or snack on. I forget her name but she was so kind. The day went by fast. Chemo was only a little over 3 hours so I didn't have to be there all day.  I had a little bit of anxiety the night before and didn't sleep well, but as soon as I got home, I took a nap.

Here is a picture from that first day.


Meeting with the radiation and chemotherapy doctors

I met with my radiation doctor first. His name is Dr. Aaron Wagner. He is also very kind and compassionate and is very thorough when he is explaining the details of treatment and what to expect. Josh couldn't go with me to this appointment, so I video chatted him in.  Most of the information I was given at this time I don't really remember. Everything is kind of like trying to remember a dream. What I do remember is him going over what to expect with the radiation. I was going to be scheduled to do a simulation where they take a ct scan of where the tumor is and they also took a mold of my legs that I would later use during radiation to help hold my body still while the machine went around me.

He also explained to me how the internal radiation was going to go.  The first one would be after my fourth week of treatment and I would have to be put under anesthesia and also would need a spinal epidural to put my legs asleep. The reason for all this was because they had to stitch in a sleeve to hold the rods that would distribute the radiation internally.  He described to me that the rods would be about the size of a straw and there would be about four of them.

He also asked me about preserving my fertility before we got any treatment started and I told him the same thing I told Dr. Grossen, that at that time I just wanted to get treatment started and if Josh and I ever decided we wanted to have kids in our life, we would adopt or foster at a later time.

This was all overwhelming but I knew it was the right thing to do. We got the next appointment scheduled to do the simulation and once that was done, I would be scheduled to do a trial with the radiation machine and then treatment would start.

Next I met with my medical oncologist. His name is Dr. Nathaneal Gay. Like all the other doctors I see, he is also very kind and compassionate.  He let me know how the chemo would go and what side effects to watch for as I was going through treatment. He worked with Dr. Wagner to make sure my schedules with the treatment went together and didn't overlap or were too spread apart.  I also met with one of his nurses to go over more in depth about chemotherapy and also the different resources available to me. I was given a wonderful little bag of goodies that a local non-profit puts together for each cancer patient. It had all sorts of great stuff in it like some hand lotion, some ginger candies and tea, some hand sanitizer, a thermometer, a sipper cup. It was very nice.

The scary "C" word

The next two months were a whirlwind to say the least. I'm still wrapping my head around the fact that I went through cancer. It's so weird.

I met very briefly with Dr. Kim before I went to meet with the oncologist. He wished me luck and answered any questions I had and was still very compassionate. My new doctor was Dr. Elizabeth Grosen at Spokane Gynecologic Oncology. She is very different than Dr. Kim, but very real in how she explains things. I felt very comfortable with her. She explained all the different options I had and what would happen depending on what they find on my scans.  She had ordered me to have a pet scan and an MRI so see a more detailed scan of what was going on with the tumor. At this point, we only knew I had a tumor and it was cancerous, I still hadn't been scanned.

The month of March 2019 was full of scans.  I had the ct scan done first, which probably didn't show much detail since I still had quite a bit of inflammation from the cone biopsy.  A few weeks later I had the pet scan done and I got to have that first thing in the morning which was nice since I couldn't eat or drink anything until that was done. I had the MRI the next week after, and that one was a little hard. I didn't have to prep for it really, but staying still in that tube is hard. I don't usually get claustrophobic, but watching my breathing pattern and trying to not let my chest move too much, I almost hyperventilated. It was weird.

I got the results from the scans on April 1. Unfortunately it wasn't a joke.  We discovered that the tumor was about 3-5 cm and up towards my uterus and also that there had been a spot on one of my lymph nodes that they had suspected was the cancer. So she went over what the next steps would be and also staged me at that point. It was staged as 2b she said almost 3 with the lymph nodes being involved.  The treatment was going to be 6 rounds of chemo, 28 rounds of external radiation and 5 rounds of internal radiation called brachytherapy. I asked about a hysterectomy and she said because of the location of the tumor, and lymph node involvement, it would actually be better to do the treatment instead of surgery. I still have my whole uterus today. although nothing works.

She also asked me if I had wanted to preserve my fertility. She said that they could go in and retreive some eggs before I started treatment as the treatment would kill my ovaries and that I would not be able to have children naturally on my own.  I had decided that I really didn't want to put treatment off, and if there was a chance that treatment didn't work, I didn't want to bring a child into the world only to not be here for most of their life.

I got referred to a radiation oncologist and a medical oncologist that would administer my treatments to me.  I had decided to do my treatment at Cancer Care Northwest and Kootenai Cancer Clinic in Post Falls.

The follow up appointment

Six months later, well seven months actually, I scheduled my follow up appointment. It was January 23,2019. I had my check up and Dr. Kim said everything was looking good, but they still did a pap smear to make sure.  This still came back as abnormal so he decided the next step would be to do a cone biopsy.

This was to be more invasive than the leep. I would have to be put under anesthesia to do this. I still wanted to be able to have babies, so the goal was to remove the bad cells and also keep as much of my cervix as we could. We scheduled the surgery for February 26, 2019.

That day was a normal surgery prep day. No eating or drinking anything after midnight. The usual stuff. My surgery wasn't scheduled until 1pm, so it felt like a long day. I had Josh with me that day and also his mom was there.  I got called back to be prepped almost immediately after I checked in. And got to relax a little bit and watch some TV until they were ready for me.

The procedure went well, however, when Dr. Kim cut into my cervix, he immediately saw the tumor. He couldn't be 100% for sure until it was biopsied, but he suspected it was cancer. He went out to the waiting room when I was done and let Josh and his mom know what he had found and that everything else went well while I was waking up.  He did come and talk to me after I had woken up, and I vaguely remember, but it didn't click at that time.  I went home and recovered for a few days and was in a little bit of pain for a few days after that.

Two days later Dr Kim called me himself and let me know the results had come back and it was definitely cancer. I was devastated as that also meant I wouldn't be able to have babies. I was scheduled to see him for a follow up a few days later and also referred to a gynecologic oncologist.  He also scheduled me a CT scan so that we could get a better look at how big the tumor was. This was so crazy to me how quickly it accelerated.  How could I have cancer?

The Leep

LEEP stands for Loop Electrosurgical Excision Procedure. It's a treatment that prevents cervical cancer. A small electrical wire loop is used to remove abnormal cells from your cervix.

June 20, 2018 is the day I had my leep done. It was definitely a different experience that is for sure. So I arrived at my scheduled time. I didn't really prepare myself for what was to come. I should have taken some ibuprofen before I got there, but I didn't think I would need it. I thought it would be like the biopsy, just a small pinch that didn't really hurt. But I was really wrong. When I went back, the nurse took me to the room where they do this procedure. She explained to me what it was they would be doing. They were going to numb me before they got started.

I didn't get to see Jessica this time around. I had Dr. John Kim. It was the first time I met him, but he was so kind and compassionate. He made me feel as comfortable as I could in that moment. The nurse gave me a injection of some anti-inflammatory for the pain before they got started. They let that kick in for a little bit then it was time for the procedure. 

I had to be a still as I could when they injected me with the numbing stuff. They didn't show me the needle before hand, which was nice because it wasn't small.  This part was really painful and it was difficult to not move or pull away, but I listened as best as I could.  

Finally, it was time for the leep. This was even more painful for me. I felt everything. The numbing stuff wasn't working. I had to power through it to get it done. He did two swipes to remove the cells and then put on this weird green gunk stuff to help heal the cervix and stop the bleeding. It was, at that time, the most painful thing I had been through.  I had originally only taken the morning off of work because I thought it wasn't going to be that bad.  I ended up taking the rest of the day off to rest.

I got a call from the results of that biopsy a few days later and was told everything should be good now and to come back in six months for a follow up pap smear.  I was hopeful that that would be the worst thing and that I would be fine and be able to have babies.  Little did I know what lied ahead for me.

The first doctors appointment

When I finally decided to go see a doctor, I did a little research and asked my friends where the best place to go would be. I decided on Coeur Obgyn. They were great there. I was completely comfortable. I did not feel judged at all. I saw Jessica Brown in the office. She is a Nurse Practitioner. She was kind and friendly and made me comfortable.

This appointment was in April 2018. It was normal just like any other well woman check. She said everything looked good and I was sent on my way. I got a call a few days later that my pap results had come in and they were abnormal so they wanted to see me again for a colposcopy. A colposcopy is a procedure to closely examine your cervix. While she was looking at my cervix, she took a small biopsy to have a better idea of what was actually going on.


I got the results from that biopsy a few days later and they came back as CIN 3. Which is also classified as high risk cervical dysplasia, or pre-cancerous cells. She recommended me get a Leep done to remove those bad cells to lessen my chance of it turning into cancer. At least that was the plan. So we went ahead and scheduled the leep. I was to have that done in June.

Introduction

Hi, my name is Amanda and I started this blog to share my journey through cervical cancer. I wanted to share my journey because when I was f...