Wednesday, July 27, 2016

5 days later

I was feeling guilty that I hadn't updated this blog since I received my first round of chemo...I got online to tell everyone was Friday was like & saw that I did update Friday night! I don't really remember doing that but the blog is good & I can't find anything I would change so I'll let you know about the days since.

I received chemo on Friday & didn't notice anything irregular. I was tired but attributed that to working the night before & took a normal nap when we got home. Saturday was ok. My energy was starting to fall but I didn't really notice anything else. I did go out & do some stuff with the kids but I think everyone noticed I was running in a lower gear. Sunday was rough. I did manage to make it to church & to lunch, but I fell asleep while we were waiting for our table at the restaurant. I woke up to eat some dinner which I couldn't really taste & then went back to sleep. Monday I was feeling about like I did on Saturday - just run down. I did work on Monday night & while I didn't like it, it wasn't unbearable. Tuesday I slept most of the day but when I woke up that afternoon I felt ok & today (Wednesday) I have really felt pretty normal.

Side effects - the biggest two I was warned about were nausea/vomiting and fatigue. I didn't have any nausea. I have been very tired & very thirsty. I constantly have a glass of water with me. I did notice some differences in how food tastes Sat - Mon. Things were just very bland but I didn't want to eat anyway. I also have had some heartburn, a pretty consistent mild headache, and have felt pretty "foggy" at times  - like I can't remember exactly what I want to say or get the right word out. I've heard all of this is normal so I'm anxious to see if anything new appears when I got back for round 2 next Friday.

I got the call on Monday that my genetic test results are in & I did test positive for the BRCA2 genetic mutation. This mutation means that I'm much more likely to develop breast cancer in the other breast later, as well as carrying a higher likelihood of developing ovarian cancer so the surgeon is recommending a bilateral mastectomy (removal of both breasts) as well as removing my ovaries. This is the same reason Angelina Jolie had her mastectomy so you might have heard of the BRCA gene. This has been a lot of take in but it doesn't change anything regarding my current treatment & I will continue doing what I'm doing. Surgery was always something that would probably happen in January, now it's just a bigger surgery than what was originally planned.

Tomorrow I have my bone scan & Friday I'll meet with my oncologist again & see how my labs are running. Thanks again for all the thoughts & prayers, cards, and for the two families from church that brought us dinner on Sunday & Monday night. It's such a blessing to know that those areas are being taken care of, even when I don't feel up to it.

Friday, July 22, 2016

Chemo Session 1 is Done.

I had a super busy week & not much time to blog & let everyone know what was going on. On Tuesday I had a small surgery to have my port placed so they don't have to stick me anymore for blood draws & chemo. It was quick & painless. Wednesday I had to go to the dentist & get two cavities filled. Chemo can wreck your mouth & I didn't want to leave anything to chance. On Thursday I was scheduled to get a bone scan done but I rescheduled that for next week because I also had to work Wed. & Thurs night. The bone scan takes several hours & I knew if I did it Thursday I wouldn't get any sleep. Then on Friday morning - my first round of chemotherapy.

We showed up at 8am & I was called back for some labs. They will do this every time so they can see what my blood counts & make sure I can handle another round. If my white blood cells or red blood cells or any other number of things are "off" it can delay things. Mine were perfect & then we went to the chemo room. The room at the facility I'm going to has lots of what look like office cubicles but they have grey recliners for the patient, another chair for a guest, tv's, and various medical things. You get assigned to a pod & a nurse that is where you have your chemo. You are given a special mix of pre-meds before chemo actually begins & mine included Aloxi & Emend (anti-nausea), Decadron (steroid) & Benadryl in case I had any sort of reaction to the chemo. As soon as that hit me, I could feel myself start to fade. Benadryl from a bottle makes me sleepy but this from an IV was crazy strong! My husband said he could see my eyes get glassy & fighting sleep became a little difficult.

After the pre-meds, which took about an hour, I started with the actual chemotherapy. As I said in the last blog, I'm starting off with four bi-weekly treatments of AC (red devil) chemo that includes two drugs: doxorubicin (Adriamycin) and cyclophosphamide (Cytoxan). As you can see, the chemo is actually red!

I honestly don't remember much after watching the first med turn all the saline it mixed with red & make it's way down to my port. I would wake up when she came to switch meds, but I mostly slept. My husband just sat & watched me, got things if I woke up & asked him to, chatted with the people around us, and ran his phone battery down. The Benadryl combined with lack of sleep was just a little too much for me to fight. I did find out that when they flush my port with saline it leaves a very strange taste in my mouth so I was very thankful for the jolly ranchers that Mom sent me. The strong flavor of a candy or mint can help with that weird taste. I had also read that eating ice during the first 10 min of each chemo infusion can help avoid mouth sores & I intended to do that, but just fell asleep. I will try to remember next time. I did get a Neulasta auto-injector placed on the back of my arm. Neulasta is injected 24 hours after chemo & causes your body to release a ton of white blood cells to try & build your counts back up so you can fight off infection - kind of important for someone who works in a hospital. That will inject me tomorrow & can cause some bone & joint pain & I was told to take Claritin (yes the allergy medicine) for that. It apparently binds to the protein & makes the side effects of the Neulasta not as bad. So now I have Claritin, Zofran, Phenergan, Ibuprofen, medicine to try & keep me from getting fever kitchen counter is starting to look like a pharmacy counter. 

Chemo Infusion #1  

We were there a total of about 4 hours. I was never uncomfortable or in pain, and I'm glad the first one is over. Fear of the unknown is the worst for me - like not knowing how I'm going to feel tomorrow or the next day - so I'm glad I know now. We did go up to the American Cancer Society Resource Room before leaving & even though I'm not sure I will wear it,, I did pick out a wig. They had one in almost my exact hair color & style & since they are provided free of charge I decided to take it. I can always donate it back if I don't use it. I also came home to two chemo beanies that my step-mother had ordered & I think I will really like those. They re-iterated again that I should expect my hair to go in 10 to 14 days & that I'll start experiencing some changes with how things taste.

I'll let you know my opinion on what to take in your "chemo bag" when I've done some more. I took several things but all I needed to day was a blanket and some candy. I saw several women coloring or reading but I just slept. And thanks again to all the ones who checked up on me today. I have immensely enjoyed an Edible Arrangement that came from a friend today - gotta finish that off quickly before the taste changes begin!

Me & my amazing husband.

Saturday, July 16, 2016

Suspicions & Plans

This week has been a long & a bit of an emotional one for me. I had my PET scan on Tuesday the 12th & that was a bit stressful. During a PET scan you are injected with a glucose solution that has a small amount of radioactive material. Cancer cells often use more glucose than normal cells so you will be able to "see" them on the scan. I'm always a difficult stick & this time proved no different. It took them 6 attempts before they could get the IV in to give me the medication needed to compete the scan. I DESPISE to be stuck in the top of my hand but they did it on stick #5 and still missed! The winning stick was in my wrist, then I had to wait an hour for the solution to be absorbed, and then the scan lasted about 20 minutes.

My second appointment with my surgeon was on Wed. the 13th. I was informed that not only was my "suspicious" lymph node lighting up on the PET, but so was a place on my hip & pelvis. This didn't change my treatment plan, and he was still planning the same (chemo first and then surgery). 

I met my oncologist on Friday, July 15th. He was more concerned about the spot on my pelvis & hip & has scheduled a bone scan next week. We also discussed my treatment plan & he agrees with my surgeon. We will do chemo first & then surgery. With my age & otherwise good health he said he felt comfortable going at this as aggressively as he could. The goal at this time is to get a port put in early next week and then begin chemotherapy on Friday June 22nd. That is less than a week away you guys. I don't know why but scheduling those two things - the port and the actual chemo itself - has made this all very real & my spirits have been a bit lower today. I'm sure things will improve tomorrow but today has been hard. I can't even really explain why. I knew all these things were going to happen & they seem to be happening right along with my expectations but it was still a low day...

My actual chemo is pretty typical for my type of cancer. I'll be receiving a treatment called AC-T. I'll get four bi-weekly treatments of AC & then up to 12 weekly treatments of the T. AC (red devil) treatment includes two drugs: doxorubicin (Adriamycin), and cyclophosphamide (Cytoxan). The T stands for Taxol. 

The "A" part of this "chemo cocktail" blocks DNA production in your cells, and inhibits the enzymes responsible for repairing DNA. Cells can't live without DNA and die off when they're deprived of it. In fact, some even kill themselves when their DNA is damaged. While "A" doesn’t distinguish between cancer cells and normal cells, it has a greater negative effect on cancer cells since those cells are dividing so rapidly. The "C" part of this chemo combo stops cancer cells from replicating.

Taxol, which is given after the AC, will stop the cells from dividing. Cancers form when cells within the body multiply uncontrollably and abnormally. These cells then spread and destroy nearby tissues. Taxol works by stopping the cancer cells from dividing and multiplying. This kills the cancer cells and stops the cancer from growing.

I expect next week to come in like a wrecking ball if we are going to start chemo on Friday. Please forgive me if I am short or don't respond to a message as quickly as I usually would. It all still seems very surreal to me at times - like I'm watching someone else's life. We have told our two older children but I still haven't figured out to tell my five year old. The details are going to have to be told to them all at some point before Friday in a way they can understand & then we all just have to get ready to hold on for this ride. 

Monday, July 11, 2016

My Heart is Full

We live seven hours away from our nearest family & have only lived in Oklahoma for 5 months. I was more than a little nervous about our support system here. We have been going to church & are making some friends through there & our jobs but it's not the same as those friends who have known you forever or your mom. 

When I was first diagnosed my phone went off consistently with messages & most of them were from people here. People who haven't known me that long. People who might not have reason to care all that much yet. But they do. 

I have received a card in the mail nearly every day. Our entertainment center is filling up with them & I'm going to have to come up with a creative way to display them. It helps to read the notes inside & I love them. I also received a special prayer blanket from a lady I go to the gym with. She made it & then members of her church prayed over it on Sunday.

I don't know that I have ever been more touched than I was this past Sunday at church. We were the last ones to arrive to our small group (Sunday school) on Sunday. I was messing with my necklace & not really paying attention as I asked one of my friends to help me with it. My husband came in just a bit behind me & as I sat down next to him he commented "I think we missed the pink memo" and then got a funny look on his face. I looked around & every single person in my class was dressed in pink. I was just speechless & that's not something that happens to me very often.

To see that room full of pink, in support of me, gave me a feeling I will never forget. I still can't find the words to say how much it meant to me. And if that wasn't enough, they had gotten me an amazing gift. If you are from OK you probably know what Rustic Cuff is. They are bracelets that are HUGELY popular here. I got a stack of various pink ones & the most awesome pair of shoes ever. I will wear these bracelets & shoes to every treatment & remember the way these people made me feel - loved, supported, amazed. I was in tears, my husband was in tears, and I continued to cry over it through the day. I'm a little misty writing this now. It was absolutely incredible & I will remember this the rest of my life. 
If you know someone going through a rough time - be it cancer, divorce, fertility issues, whatever - let them know you are thinking of them & love them. It has already made such a difference to me & I know it would to them as well. 

And to everyone that has prayed, sent messages, read these blogs, gave a hug, sent a card, wore pink, was involved on Sunday, or just sent a happy thought our way - THANK YOU! I don't know that I'll be able to say how much it has meant. 

Thursday, July 7, 2016

"Dangling" & meeting the surgeon

I had my MRI & my first appointment with my breast surgeon on Wed. July 6th. 

First - the MRI. I have had an MRI on my shoulder before. They give you an IV with some contrast, you lay back on a little table, and go through the tube for a while - no big deal. This one was different. I still got the IV and had to lay on the table but you lay face down, almost like on a massage table, with one big (I found hilarious) difference. There are two holes in the table that your boobs go through so they can get a good view of your breast. So you are laying on this table and your boobs are just hanging there. The lady who did my MRI might think I have issues because I kept laughing when she was making sure I was "dangling" properly. I had to make a real effort not to think about it during my time in the tube or I would start laughing again! My MRI took 30-45 min or so and then I had my appt. with the surgeon at noon.

I REALLY like my breast surgeon. He was super nice, realistic, and optimistic. Our personalities matched well and I think this will be a good thing. My tumor is showing up as 3cm on mammogram & 4.7cm on MRI. He classified my cancer as a Stage III (3) due to the size of the tumor & probable lymph node involvement. He also felt that the lymph node was suspicious and did another biopsy. So far, that has been the most uncomfortable thing I've dealt with. I'm usually good with needle sticks but the arm pit is a sensitive area & my toes curled & I might have made a whiny noise when he started to numb the area. He did a fine needle aspiration where he just took some fluid out. He called back today and said there were cancer cells in the lymph node, but not a lot, and the area is still classified as "suspicious" and it hasn't changed the Stage of the cancer. I'll have a PET scan to confirm the spreading to the lymph node & that will also confirm or change the Stage.

His suggestion is that I do chemo first, then surgery, and then radiation. The chemo can help shrink the tumor plus get other other cancer cells that have spread - a concern if the lymph node in involved. I do not have to decide if I want a lumpectomy (surgery where they remove the tumor and some surrounding tissue) or a mastectomy (complete removal of the breast) right now. The oncologist will also weigh in on the chemo vs. surgery first decision but the surgeon feels that I will begin chemotherapy by the end of the month and then have surgery in about six months. My GYNO also agrees with that decision so I'm thinking that is the way things are going to go. I also had some genetic testing done to see if I carry the BRCA gene mutation that makes me more likely to have breast cancer. If I do carry that gene a bilateral mastectomy is what they recommend.

I'm scheduled for a PET scan on Tues, have another appt. with the surgeon on Wed., and then have my first appt. with my oncologist on Friday.

Tuesday, July 5, 2016

Lots of Big Words!

I'd like to go a little more in depth on what has happened between my appointment on June 16th through today (July 5th). My appointment for my MRI and with the breast surgeon is tomorrow & I don't want to get behind before I've really gotten started.

On June 16th I brought this lump to my new GYNO's attention and she scheduled me for an appointment for a mammogram the next day (June 17th). After the mammogram they took me back for an ultrasound. I knew something was up after the technician looked at me for a good 20 minutes and then the radiologist came in and looked for at least 10 minutes. After my ultrasound the doctor told me he was "highly suspicious of cancer" due to some irregularities in the shape & calcifications of the tumor as well as some irregularities in a lymph node in my underarm. I was scheduled for a biopsy on June 28th. I found out later my mammogram was given a BI-RADS score of 5. 

BI-RADS? That was the first word that didn't make sense. It's easy to explain though. When the radiologist reads the mammogram they give it a score of 1-5 to communicate with other doctors how concerned they are about what they saw. This number is called the Brest Imaging Reporting and Data System (Bi-RADS) score. A 1 is a good score - it means no signs of cancer were found. 3 is a gray zone that means your mammogram is probably normal but you have some signs of cancer (2%) and will need a follow up mammogram in 6 months. 4 means you have suspicious findings and you have a 25%-35% chance that breast cancer is present. Then there is a 5. A score of 5 meant my results were "highly suspicious" with a 95% chance of breast cancer & I needed to have a biopsy.

I went in for my biopsy on June 28th. I was scheduled for a Core Needle Biopsy. This sounds so scary but mine was pain free. I'm a little bruised & sore now, but the actual biopsy was no big deal. I was numbed up while lying on a table & the radiologist used ultrasound to guide him. I was given a little incision & the doctor placed the biopsy needled in through the incision. When the doctor pulls the trigger on the "gun" attached to the end of the needle, the needle enters the tumor really fast and cuts a core of the tissue. I thought the gun looked like the ones they use to pierce ears! I had this done three times. Then they put some steri-strips on & I was on my way. They asked if I wanted to come in to receive my results or just be called & I chose to have them call me. They also placed a tiny metal marker in the tumor so if it did come back to be nothing, it would be known in the future that it had already been biopsied. I had to have another mammogram to verify placement & I asked to see it. It looked like a cancer you see in a text book. One big circle with tentacles coming out of it. I felt pretty confident then I knew what my phone call was going to say & I told my husband the same. 

I received a call the next day (June 29th) saying my preliminary pathology reports were in & they were positive for cancer. I had a 3cm tumor & possibly affected lymph nodes. They would have a more specific type of cancer & grade by the next day. I would be scheduled for surgical & oncologist consult as soon as possible and to expect a crazy 6 months. Since I work for the same health care system as I'm receiving care in, I was able to reach out to a large group of co-workers and find out who people thought were "the best" and I feel good in my choices for both doctors. I also live in pretty large urban area & feel like I'm going to get excellent care. My GYNO. is also a breast cancer survivor & she's been an excellent resource. 

My Nurse Navigator (cancer nurse buddy) called the next day (June 30th) to let me know that I was diagnosed with a Grade 3 Invasive Ductal Carcinoma. There's more big words! Everyone wants to know what "Stage" I'm in but I don't know yet. The surgeon determines that after further testing. 

Grade 3. That's easy. A Grade score let's you know how different the cancer cells' look and grow from a normal, healthy cell. They are given a score of 1 - 3. 1 (well-differentiated) just look a little different and are growing slowly. 2 (moderate) don't look like normal cells & are growing a little faster. My score of 3 means the cancer cells look very different. They are growing quickly in disorganized irregular patterns and diving to make new cancer cells..... Well that sounds bad. But maybe not. High grade cancers may respond better to chemo & radiation because those treatments target fast-dividing cells. Again, please remember that this Grade is not the same as a Stage (which is usually referred to as a number 1-4 in roman numerals). Stage is based on the size of the cancer and how far it has spread & I don't know that yet. 

Invasive Ductal Carcinoma (IDC) is the most common type of breast cancer. Invasive means that the cancer has "invaded" to the surrounding breast tissue. Ductal means my cancer began in the milk ducts. Carcinoma is any cancer that begins in the skin or tissues that cover internal organs (like breasts). So combine those three terms and you get a cancer that has broken through the wall of the milk duct and started invading the tissues of the breast. This cancer can spread to the lymph nodes & other parts of the body. They are concerned that has happened with mine but we won't know for sure until we meet the surgeon. 

I found out today a few more in depth things regarding hormone receptors. I was tested to see if my cells are responding to estrogen and/or progesterone. I am both ER and PR positive. When a breast cancer is hormone receptor positive, this allows estrogen & progesterone to "feed" the cancer cells. A cancer is called ER-positive if it has receptors for estrogen and PR-positive if it has receptors for progesterone. I am positive for both. This means that I may respond to hormonal therapy that will reduce the amount of estrogen in my body. This also means no more hormone based birth control for me. 

I also had my HER2 status checked. Ther HER2 gene is responsible for making HER2 proteins, which are the receptors on breast cells. Normally they help control how breast cells grow but in about 25% of breast cancers, the HER2 gene becomes abnormal & can cause the breast cells to grow & divide in an uncontrolled way. If this is happening, it is described as HER2 positive. HER2 positive cancers tend to grow faster, are more likely to spread, and more likely to come back, but they also respond to targeted treatments made to work against HER2 positive cancer cells. My HER2 status is borderline. They are running another test to give me a more definite status. 

Well. There you go. That's all the big words I have for today. I have an MRI in the morning and then meet with the surgeon tomorrow afternoon so I hope to have more big words like Stage and Surgical Margin and Lymph Node Involvement soon. 

Monday, July 4, 2016

Just a harmless fibroadenoma

I felt a lump in November or December of 2014. Two. Years. That's a long time to know something isn't right but still think everything is ok.

Let me explain.

I could feel something not right in my left breast in late 2014. It felt like a marble. I could feel it but couldn't see it & it wasn't causing any issues. All the same, I asked a doctor about it at my yearly GYN appt. in Jan. of 2015. She told me it was a fibroadenoma - basically a little fatty tumor. I asked if I should get a mammogram. She said no. "I wouldn't bother. Insurance won't pay for it since you are too young to be worried about breast cancer. It's just a fibroadenoma & that's really common and nothing to be worried about." So I believed her and didn't worry.

Fast forward to 2016. This harmless fibroadenoma was changing. It had grown. It became visible. Then it began to itch and hurt. My skin changed. My husband and a friend began encouraging me to go to another doctor. So I made my appt since I needed to go the GYN again anyway. She felt it and said NEARLY the same thing. "It's probably just a fibroadenoma but lets get you a mammogram just to be sure." The mammogram was scheduled for the next day. And then an ultrasound, and then a biopsy, and now appointments with surgeons and oncologists because it was not just a harmless fibroadenoma.

I don't know if this was cancer two years ago and I've given it two years to spread or if the changes I felt this year were it changing into cancer because I didn't insist on getting a mammogram in 2015. I may never know. But let me say this - know what your boobs feel like! Know what your normal is! That way, if anything changes you will know something isn't right & can tell your doctor. Most breast cancer is found by women checking things out on their own and finding something that "isn't right". And if you do find something wrong, be a strong advocate for yourself and insist on finding out for sure with a mammogram. I know better & still just let it go. I work in healthcare and know how often a doctor can be wrong. They are human and it happens. 30 year old women aren't supposed to get breast cancer. I will regret that decision to ignore this forever but I hope I can help someone else learn from my mistake. Know what your normal is so you know if something isn't normal!

An Introduction

An introduction is typically what you do first, so I will start there.

My name is Jerina. I'm 32 years old, have three wonderful children, an amazing husband, a job that I love, and breast cancer. I'm at the beginning of this cancer journey but I have family that want every little detail of my treatment that can hopefully read it here and I hope to be able to make a difference to at least one other person facing this same situation by writing this blog. When I first got the results of my biopsy (Invasive Ductal Carcinoma - the most common type of breast cancer) I felt like I had been diagnosed with an "old womans disease" but I'm learning every day how wrong I am. There are an estimated 250,000 breast cancer survivors living in the United States who were diagnosed with breast cancer at age 40 or younger. That is a lot of young women! I have already met some who were around my age & dealing with the same responsibilities when they received their diagnoses. You are not alone!

Anyone that knows me personally knows that I am a reader and I have been devouring information! There has been a lot of information handed to me in a short amount of time and I haven't gotten through it all yet, but I can easily see where someone who didn't have a basic understanding of medical terminology would be completely overwhelmed.

In Situ cancer. Invasive Cancer. Grade. Stage. HER2 Status. Lymphovascular invasion. Mastectomy. Lumpectomy. Hormone Receptor Status. Chemotherapy. Hormonal Therapy. Targeted Therapy.


That's a lot of big words and I will do my best to make it easier to understand & digest. Those big words can be scary.

I also love to laugh and can always find the humor in most situations so I'm trying to laugh my way through this as much as possible. I won't tell you that I didn't have one breakdown after I first heard the words "you have cancer" because I did. But it doesn't help my situation to crawl into the dark. I have to keep parenting my kids, working, going to church, loving my husband, and laughing. Laughter is, after all, the best medicine. So my husband was not all surprised to hear me use cancer as an excuse not to do something (help fold laundry) as soon as possible. It didn't work.

If you have any questions, please ask away. I will update again soon with more specifics to my exact diagnosis.