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.