Surgery & the days since

I headed to the hospital for my bilateral mastectomy on Dec. 5th. My mom was in town from Kentucky so my kids were all taken care of & my husband was able to be with me every minute of my time in the hospital. I honestly don't remember much of the day of surgery or the day after. I remember being taken back to surgery & I remember waking up & wanting Rich. I remember getting up the next day, taking off my wrap to take a shower, looking at myself in the mirror, & having a good cry. I remember getting in the car to go home. That's about it. I know people came by to see me & I'm sure I talked to them but I don't remember who they are or what I said! It was a pretty miserable two days & I'm glad I don't remember it very well. Everything that involved moving my upper body hurt.

I spent most of my first week home in my recliner. My sweet husband slept on the couch so he could be close. I would tell him to go to our bed and he would just say "you might need me" and lay down. I couldn't do anything for myself for that first week. I had four drains & I couldn't even get myself in the shower or wash easily. I'm so grateful for him and my mom. He took care of me & she handled the kids but when he had to go to work, she took right over. I have no idea how people do this without the help that I had. I'm glad I don't have much hair - I couldn't even get my arms high enough to wash it! I couldn't get myself out of the recliner! I hope I'm getting you a good idea of how helpless & useless I felt! I hurt & was like a giant baby. I compared to myself to a baby more than once when Rich was helping me tie my shoes! The drains were actually the worst part. They pulled & were so uncomfortable! Once my drains came out - I lost two at the one week mark & the other two at the two week mark - I started to improve quickly.

The month passed quickly. I still have to be propped up when I sleep & I still don't have a very good range of motion in my left arm. They removed five lymph nodes & two had cancer in them. This means radiation is a must have. The doctors also seem to be un-convinced by the bone biopsy. There seems to be nothing that the spot on my pubic bone can be aside from cancer so I will be having radiation on my pubic bone as well as my left breast & underarm. The spot on my bone is confusing to me too. It is cancer, it isn't, it is, it isn't. I've finally resigned myself to the fact that all my doctor's think it is & they are going to treat it as such.  Accepting that means I accept that I have metastic breast cancer & I may never have complete remission. But that's a post for another day after radiation and more discussion with people who know more about this than I do. Either way - I'm doing fine today and I'll be fine tomorrow.

I go every Monday to see my plastic surgeon & get 60cc of fluid in my tissue expanders. I'm at around 400-450cc right now & will probably keep going until I reach 750-800cc. After I'm done with the fills I start radiation. I have to do 33 rounds of that & then I'll get to have my second breast surgery 4-6 months after that. My incisions are looking great & I think they are going to scar nicely. I'm eager to see the end result. I go back to work next week & I'm ready to move into my new normal.

Going Viral

On the Wed. before surgery we decided to go eat after church. Rich had to work Thursday & then I was working Friday & Saturday. We knew it was going to be one of our last chances to go out before surgery so we headed to my favorite Chinese buffet. We had gotten done with our meal & were getting ready to ask our waitress for our check when she brought us this note instead.

I don't want to be misunderstood - this is not the first, or the last, that someone has shown my family a kindness. Many of those times it has been someone we don't know. But I took a picture & posted it on my Facebook page. It went nuts! The picture was shared hundreds of times but then it got picked by another Facebook page called Love What Matters. When that happened it went viral. Thousands of people read the story & saw the picture. I had reporters contacting me from all over the United States & several other countries. It was on ABC, CBS, even Ellen Nation! Our local Fox affiliate came to the house & did an interview. I think after all the bad that you see on the news people like to see a little bit of good & some kindness.

The man that wrote me the note & paid for our meal saw the new story & we have been in touch. His wife was around my age & died of a type of bone cancer. They had three children that are close in age to my own. I was expecting it to be an older man but was surprised when he was only a few years older than me & we had a very nice phone conversation. We were actually contacted by NBC Nightly News and they wanted us to meet on camera before Christmas but due to various conflicts it just didn't happen. That's ok though. I'm happy that the story touched people and made them happy & if this is my 15 minutes, that's just fine by me.

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."