Reaching for the top of the hill

The results of my bone biopsy are in. NO MALIGNANCY! This means the biopsy they took showed no signs of cancer. While my doctor wasn't sure what exactly is showing up on my scans & said they would continue to watch it, he was pleased with the results & treatment would continue as planned with surgery & radiation to the breast & underarm area only. I'm very thankful for that & know all the prayers being sent my way had something to do with it.

Surgery. That's coming on Monday y'all. 3 days! I'm nervous & scared & excited all at once. I'm excited to have this cancer out of me! I'm scared to have the pain & drains I know that come with it. And a little nervous to see what I'm gonna look like after. I've felt like I'm nesting here at home. I've been decorating for Christmas & wrapping what gifts we've gotten & cleaning & trying to fit in all the time I can with my husband & the kids. The kids know I'm having surgery but I don't know that there is really a way to prepare them for what's to come & how useless I'm gonna be for a week or two. My mom is coming to stay for as long as I need,  so I know that between her, my husband, & kids I will be well taken care of.

This may be my last update before surgery. I had all my pre-op appointments yesterday & I'm packing my bag for the hospital today before working tonight & tomorrow night. I plan on enjoying a night at The Christmas Train with my family on Sunday night before we go in on Monday morning. Thank You again for all the support so far. I feel like I'm reaching the top of this hill with surgery & then I can start sliding down.

Bone biopsy

I hope everyone is excited about Thanksgiving & ready to eat, eat, EAT! We aren't going to be able to go "home" for Thanksgiving. I have to work Wed & Thurs night since neither of us really had to the time to take off work with surgery coming up in less than two weeks. We didn't want to just be left out of the day though so we decided to have FRIENDSGIVING with another couple from church. We are going to get together with them on Friday night & have a huge, super traditional, Thanksgiving meal. I'm really looking forward to having our house full of love & laughter and just forgetting about all this for the night. I'm making the dressing, green bean casserole, crescent rolls, chocolate pie, and pumpkin pie! I'm also taking another dressing to work on Thursday night so I'm going to do some cleaning & food prep after I get done writing this!

I had my bone biopsy yesterday so a final decision regarding the stage of my cancer and whether it is in the bone or not can be made. It was a pretty painless procedure. They took me to a CT room (it was a CT guided biopsy) and gave me some drugs to put me in a "twilight state". There was an octopus, fish, and sea grass painted on the tiles above my head & I remember laughing because the grass and legs of the octopus began to move! After that I don't actually remember much of the day. I DO, however, think I remember waking up at some point to tell them something was hurting & seeing the doctor drilling into my hip with what I believe was a yellow Dewalt drill. I told him it hurt & then went back to sleep. I then remember waking up & my husband being there asking me to try & eat and drink. I remember drinking apple juice & eating peaches that he was feeding me. Then I remember being home & in my recliner. I know more happened during the day but I don't really remember it. It's so weird to lose a day! I know I was there & I know I said & did things but I'm not really sure what they were & if I should be embarrassed or not! I was told I would know results in 3-5 days so I'm expecting it to be next week due to the holiday & weekend.

Hope you and yours have a Happy Thanksgiving! I can say that one positive thing about having cancer through the holidays is that I am so much more aware of how blessed I still am and how grateful I am for these moments. Sometimes these days just fly by but I'm determined to make the most of every, single, second. I hate that cancer has taken so much time from me and from us, but I won't let it steal my joy! We will get every bit of fun we can out of this and create memories that I hope last the rest of our lives! So eat that turkey, put some whipped cream on that pie, and enjoy your family and friends! You don't know how much time you have to do so!

How You Spend Your Dash

Things never go the way we think. I think I'm nearing the end of this journey & I get news that possibly tells me otherwise. I met with my radiologic oncologist (the guy who does my radiation) and he was very concerned about a spot that had shown up on my pubic bone. We knew something had been seen in a PET scan, but I had a bone scan that showed no activity so we thought that meant I was in the clear. The oncologist believes this spot is cancer and layered all the scans on top of each other to show me how it was always there in each scan I've had. I asked why the bone scan came back as "clear" and he showed me - quite clearly there is no bone there. It appears that the cancer has already eaten a hole in the bone. I've been scheduled for a bone biopsy on Nov. 22nd (ouch...thankfully I'll be asleep) and will know more after that biopsy but the oncologist & my surgeon feel pretty strongly that it is cancer. 

What does all that mean? If cancer has spread to my bone that means I have metastatic breast cancer - stage 4. This is just a fancy word that means some of my original cancer in the breast broke off & settled in a new area. We already know that I have several lymph nodes involved & that is how the cancer moves in the body - mine just seems to have moved to the bone. A bone metastases is very common and the hip & pubic area are a common spot. The scariest part of this is that once cancer has spread to the bones or to other parts of the body it's rarely able to be cured. I may never have remission & treatment will begin to focus on length & quality of life. While they can't make the cancer go away, it can be treated to shrink, stop, or slow it's growth. The damage that has been done to the bone has been done. If the biopsy comes back positive I will receive radiation to my hip area at the same time they are radiating the breast/underarm, but I'm not really sure what my other treatment options are. The oncologist mentioned more chemo but also said that chemo doesn't work well on a bone cancer since there is such little blood flow to the bone & I just had chemo - he doesn't think more will help. So beyond radiation I really don't know.

We are still a go for surgery on Dec. 5th. I can still feel the original tumor in my breast & I've stopped chemo. If they don't remove my breast that tumor will just begin to grow & spread again. I'm too young not to treat this as aggressively as possible. This may be what does me in but it won't be today. I will fight, I will continue living my life, I will continue laughing, I will continue loving. I will not lay down & die or be angry with God. I have moments where I'm just terrified or I cry, but those moments aren't as frequent as you might think. I have things I want to do next year. Right now I'm mostly planning Christmas in our immediate future, helping with the American Cancer Society next year, and a little more in the distance is a trip for our 10th anniversary & our next family trip to Disney World. That Disney trip was going to be my "celebration" trip when I was free of cancer and, no matter what this biopsy says, I still plan to take it. The one thing I can say that this cancer has done is make me more aware of  what I can do to help others & doing all I can to create  awesome memories with my husband & my kids. I want them to have amazing memories with me in them no matter if I have 5 or 50 more years with them. I will make my dash worth something!

I read of a man who stood to speak

At the funeral of a friend

He referred to the dates on her tombstone

From the beginning to the end. 

He noted that first came her date of her birth

And spoke the following date with tears

But he said what mattered most of all

Was the dash between those years. 

For that dash represents all the time

That she spent alive on earth

And now only those who loved her

Know what that dash is worth.

For it matters not how much we own;

The cars, the house, the cash

What matters is how we live and love

And how we spend our dash. 

So think about this long and hard 

Are there things you'd like to change? 

For you never know how much time is left

That can still be rearranged.

If we could just slow down enough

To consider what's true and real

And always try to understand 

The way other people feel. 

And be less quick to anger,

And show appreciation more

And love the people in our lives

Like we've never loved before. 

If we treat each other with respect,

And more often wear a smile

Remembering that this special dash

Might only last a little while. 

So, when your eulogy is being read

With your life's actions to rehash

Would you be proud of the things they say

About how you spent your dash? 

And just like that...

...all my plans have changed. The neuropathy from Taxol hit me like a ton of bricks. One day I was fine, the next I noticed some burning in my feet, and the next my feet and hands were completely numb. The 21st was my last chemo & I didn't even know it (or get to ring the bell). My oncologist said he knew I was only going to make it through one or two more treatments &, at this point, surgery was more important than one or two more chemo's. I was given the choice to stop, take a week or two off & see if there was any improvement, or plow through with no guarantee that the numbness is ever going to get any better and the possibility of it getting worse. I chose to quit. 

While I do not doubt my decision, this does push surgery up from the beginning of Jan. to the beginning of Dec. - December 5th to be exact - and that brings a whole bunch of issues. I have worked full time the entire time I have been getting chemo. I have only missed one day of work & I'm very proud of that, but it's about to change. I will be out six weeks with this first surgery & have at least two remaining (the second reconstruction & a hysterectomy) surgeries. I have mentioned before that we have only lived in Tulsa since Jan. & I started my job at the beginning of Feb. This means I don't have 12 months in yet & I'm not eligible for FMLA. I also have to continue paying for my health insurance during this time. I have about 115 hours of PTO & I'm only assuming they will let me use all of it - I'm going to HR next week to find out what my options are. This still leaves me with a little over 3 weeks of paid leave - half of what I need. I'm so stressed out about this - I've given myself a fever blister. We have all of our normal expenses plus extra Christmas expenses & now we are going to have a loss of half of our income for a while. Add that to the knowledge that we already have gotten several thousand dollars in medical bills & you have me as a hot mess. While I know this isn't my fault, I am having a lot of guilt. I'm trying to relax, remember that the Lord will provide for us, & let people that say they want to help do so. 

We have already had offers of help. People who have gone through this have been reaching out to let me know about their experience & offer advice. My mom is coming to town for "as long as you need" & I know she means that. A friend made an online "meal train" & every meal has been signed up for after just a few hours. We are very grateful for that & it takes a big worry off me. 

I know that we will be ok - but I would be lying if I said I wasn't scared. This is the part I'm the most nervous about & it is every aspect. What am I going to look like? How much is this going to hurt? How long before I can go back to work? How are we going to afford this? How am I going to make this work when I can't even raise my arms above my head or lift anything? I'm sure there are going to be questions that I haven't even though of yet! 

Also, please give me grace if I can't remember something or have to turn down an invitation. I have 19 days off work before this happens and only 7 of those days fall on weekends. Rich will have to work 2 of those 7 so that leaves 5 days to get in some family time before I am out of order for a while. We are going to try & fit in as much "fun stuff" together as we can. I hate that I'm going miss the activity that comes with one of my favorite times of the year but I know it's better to be this way for one & be around for many more. 

Making Strides

I want to tell you about the Making Strides Against Breast Cancer Walk that I participated in last Saturday - Oct. 15th - & what an amazing experience it was for me. 

I had expressed some interest in walking to a few people but it just wasn't coming together. My husband had to work, I hadn't had the energy to fundraise, maybe next year. I wasn't planning on walking until my friend Lauren sent me a message on the 14th telling me she was planning on walking with me. Ok, cool! So it'll be me & her. Then another friend from church said she would walk. Then my friend Ali said she would be there & was bringing two of her friends from work. Then a woman I only knew on facebook from the Rustic Cuff page, Carressa, said she was coming. Carressa has had colon cancer & has been super supportive but we had never met in real life. She just wanted to know did I mind if she spread the word to our "cuff sisters" (women who are also into Rustic Cuff bracelets) who showed up in force! My husband got off work. Carressa found someone to make shirts in less than a week! This thing came together & came together fast! It was amazing! There were 20 people there to walk with Team #JerinaStrong - many of whom I had never even met! There were friends from church, work, old friends, new friends, cuff sisters, and my husband & children all walking with me & wearing shirts with my name on them. We laughed & talked & cried. At the end I was getting very tired but my team surrounded me, my husband took my hand, and we all finished together! It was an amazing experience & one I will never forget.

Not only was I blown away by the people that came out, but the support given to our fundraising efforts for the American Cancer Society knocked it out of the park! I raised $1,272 & our team raised $1,702! We were ranked #3 our of nearly 60 teams and I was the top individual fundraiser! It was an exceptionally emotional day for me. I was in tears a lot of the day. I'm very aware that not everyone has the support group that I do & I do not take it for granted how very blessed I am. I want to say THANK YOU to everyone that came out to walk & that donated. I will never forget that day! I want to use what I'm dealing with to help others & make a difference & I hope that I can continue to participate in this walk. Maybe I can walk with someone who is also thinking "maybe next year." 

Double Digits

I just completed my 10th round of chemotherapy yesterday - Oct. 21st! That means I've completed 4 rounds of AC and 6 rounds of Taxol. The Taxol has been SO much easier than AC. I still have heartburn, my eyebrows and lashes have thinned a lot, and my memory continues to give me problems, but the exhaustion that I had with AC is gone! I get chemo every Friday now & I'm pretty beat that day, but I'm not losing a day or two like I was with AC. I'm very eager to get chemo over with but also anxious about the next step. 

I have met with my breast surgeon and learned a little more about what the plans for surgery are. I also met with my plastic surgeon & learned about what my options are for reconstruction. Assuming I'm able to finish out the next 6 weeks of Taxol with no complications, I will be done with chemo on Dec. 2nd. I will get the rest of Dec. off with no treatments or procedures. I will have my first of three surgeries the first week of Jan (possibly as early as the 2nd). That is where I will have a bilateral mastectomy - removal of both of my breasts. The breast surgeon will perform that and then my plastic surgeon will take over & begin reconstruction immediately. He will place two expanders under my chest muscle. These expanders allow them to add fluid slowly to stretch my skin for the permanent implant & allow me to have radiation before the second surgery to swap the expander out with a silicone implant. Radiation can make the silicone implant hard & mess reconstruction up so I don't have that second breast surgery until radiation is over & my skin has healed. I meet the radiation oncologist the first week of November so I expect to know more about radiation then. Sometime after that I will also have a hysterectomy since the BRCA2 gene means I have a higher risk of ovarian cancer &, since we are done having children, they recommend I have that third surgery 6 months to a year after I'm done with everything else.

Aside from my nervousness about surgery, things are going well. I've only missed one day of work throughout this & I'm pretty proud of that. My friends & family continue to give me encouragement & I'm starting to see the light at the end of the tunnel.  

October is here...

...and with it comes pink. So much pink. Pink ribbons all over everything! T-shirts calling for people to "Save the Boobies" or "Hope" or any other number of catchy sayings. Even the NFL has players sporting pink. I've been "aware" & seen the pretty pink color all over everything during Oct. for years, but it took my own diagnosis to make me aware that there isn't anything pretty about having breast cancer. Please know what your breasts feel like. Know what your normal is & if you feel anything out of the norm, get it looked at & insist on a mammogram, even if you are "too young" to be worried about breast cancer. I was 32 when I was diagnosed - you aren't too young. Encourage the women you love to get their yearly mammograms & do self examinations. I care so little about "saving the boobies" - I want to save the women! Boobs matter so little when your life is on the line! I will sacrifice my breasts in a heartbeat if it means more years with the people I love & that love me.

If I ever do anything for you, I hope that I encourage you to pay more attention to your body. Spend a little extra time in the shower tomorrow & do a breast examination. You have to know what you feel like so you will know if something changes. Don't be afraid to ask questions. Don't be afraid to ask a doctor to do more testing. Be your own biggest advocate! This cancer is ugly but I will wear that pink & those ribbons. If one woman sees that ribbon I'm wearing & thinks "I need to call & schedule a mammogram - it's been a while" then that ribbon has done its job & I will have made a difference.

Speaking of making a difference - I will be participating in the Making Strides Against Breast Cancer Walk in Tulsa on Saturday, Oct. 15th. If you are here in the Tulsa area & would like to walk, please come join my team. If you aren't local, you can still donate to Team #JerinaStrong. I would love to see a few of you there to walk with me. If you would like to donate or join our team you can do so at http://mobileacs.org/2dNRKPM

AC is done!

I met with my breast surgeon last week & my tumor has SHRUNK! While I can't remember the exact size now he said it was probably 75% smaller than it was when we began. It makes taking this chemo much easier when you can see that it is actually doing something. I had this idea in my mind that if my tumor was shrinking then it meant that it was probably shrinking & killing all the teeny tiny cancer that was other places so I was glad to see that. He & my oncologist seem to be very happy with how I'm doing & how things are working. We are moving right along!

I head in tomorrow for my first round of Taxol chemo. It is not supposed to be nearly as exhausting as the AC is & he said most women find it much easier. I had my fourth & last round of AC on Sept. 2nd & it was, by far, the worst of the four. Sunday was the worst I think I have ever felt in my life. Tired...exhausted...weak...I can't find the word to explain how drained I was. I went to bed at a normal time on Sat. night & did not get out of bed on Sunday until between 4 & 5pm. Even then it was all I could do to get to the table to get some food in me & then back to the couch. I was back in bed by 11pm. I also missed my first day of work through all this. I was still so weak on Monday that I knew there was no way I would be able to make it to work. I sat on the floor in front of the fan with tears streaming down my face & told my husband I didn't think I could work & he agreed. It took me nearly a full day longer to recover this time & I'm so glad it is over. I also shook really bad this time. It started right after I got done with chemo & continued for days. That has been the strangest thing so far & I still catch my hands shaking every once in a while.

While I think my side effects may be mild compared to some so far the big ones, aside from exhaustion, have been heart burn, some mental "fogginess", and I am constantly hot - but just from the neck up. The rest of me feels normal but my head feels like someone is constantly standing behind me with a heater! I sit at work with a jacket on & a fan blowing on my head. The first week after chemo it has gotten bad enough to make me feel like I'm overheating & getting sick. It fades a bit but never completely goes away & that is my biggest consistent complaint so far. I'm so tired of feeling hot!

I should meet with a plastic surgeon sometime in the next week or so to determine what my best options are for reconstruction. The hope is that I will make it through 12 more rounds of chemo, have a break through Dec., and then have surgery in Jan. Getting through this Taxol all depends on me though & how my body does. The main side effect of this drug is neuropathy - numbness in my hands and feet - and it can be permanent. If I get to the point where I can't do things at work or have trouble buttoning buttons or something we have to stop. He said I have to decide if I can deal with how my hands feel for the rest of my life when deciding whether to keep going on not. There can also be some changes in my nails & skin but I'm more concerned about the numbness - the other changes aren't permanent.

People continue to amaze me with the love & support they have shown us. People from church have shown up every two weeks with meals when I'm too weak to do it. I continue to get cards & text messages from people to just let me know they are thinking about me. That means so much & I thank everyone who has reached out in any way.

What happened to her hair?

First off, I want to apologize for the delay in my updating this blog for those that are keeping up. We have been SUPER busy the past two weeks! My kids are getting ready to start school & my husband has picked up several shifts of overtime so all that in addition to my own work & doctors appointments has had us stretched pretty thin. I have lots to tell though.

Bone Scan - my results were CLEAR! There is no cancer in my hip or pelvic bone. My oncologist was thrilled & said "this takes us from life prolonging treatment for you to curing you. You will have full remission." I think I might have floated out of his office & I feel like it was the first good news a doctor has given me in quite a while.

I have my second round of chemo on Friday, Aug. 5th. My experience was pretty much the same this time. Slept during treatment, felt ok Friday & pretty much all of Sat. Made it through church Sunday & was then worthless the rest of the day. Felt pretty crappy on Monday but managed to work again on Monday night. Slept most of Tuesday morning/afternoon & then started to get back to normal by Tues evening. I haven't experienced any nausea or vomiting yet, but do have the extreme fatigue & heartburn.

Now, for the biggest news. I have lost all of my hair. I got in the bath on Sat. & started to pull big pieces out while I was washing my hair. I had told my husband that I did not want to deal my hair falling out for days & he agreed but we had some back to school shopping planned for Sat. so I fixed my hair as well as I could (my tub & sink were full of hair) & we went about our day. When we got home Sat. my husband & kids cut it with scissors & then my husband buzzed my head.

I did ok emotionally until about half way through it. He stopped to clean up some hair off me & the floor & I was able to just look in the mirror at what was happening. I got a little overwhelmed at that point. Realizing that the changes in my body were only beginning but they were finally here & there was no going back. I'm so grateful for my husband & kids though. They were so warm & caring that night & continue to be so. Especially my husband....

He has supported me in every step & decision I have made regarding how I deal with this & the loss of my hair was no different. I continue to get those kisses on my bald head & get told to do "whatever is comfortable" when it comes to how I deal with it. He's been pretty amazing through all this & I'm glad to have him on my side.

I thought I would want to cover myself but I'm finding that I'm more comfortable just being bald. The kids act like they don't even notice anymore. I do notice some other kids staring at me or hear them asking their own parents what happened to my hair or why I'm bald. I've told the little ones that, if anyone asks them, they can say their mom has to take medicine that made her hair fall out & that seems to be enough for them.

I'm so grateful for the support of my family during all this. Not just the people in this picture, but my parents & more extended family & friends. The love showered on us has been overwhelming at times & has brought both of us to tears on more than one occasion.

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.

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 blisters....my 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.

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. 

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. 

"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.

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. 

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.

Huh?

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.