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.