Monday, November 26, 2012

The Dash

Good Morning,

I do not have a lot to report.  Just counting down the days until surgery.  I have mixed feelings about this date.  Am I scared, Yes, scared that a simple surgery could go wrong.  But I think everyone has that fear before they are put under for a procedure.  Am I anxious, Yes, anxious for my blood work and pre-op testing tomorrow to come back within normal levels so we can know for sure the surgery will happen on 12/6/12.  Also anxious for how I think I will feel the morning of not only before the procedure but after.  I can only imagine the nerves that will go along with that morning!  I also wonder how I will actually feel when I wake up and know the not only the cancer is gone, but my breasts.  I try to joke about this a lot and I mean it, but I know deep down, this will bother me.  They are a part of me.  They probably deserve their own blog!  I hope they can give me some good calming drugs:)  Am I excited, yes, a little excited to just have another part of this journey done and over with.  

So as the date gets closer, I notice myself thinking more about things and I'm trying to find signs everywhere that it will all be okay.  I know I am in great hands and all of the prayers that will be said, there is no other way.  My job is to rest while they perform the surgery and wake up and be thankful the tumor will be gone from my body.  The next steps will all be up to me and my body.  I think I can handle that, right?  

Since I really don't have much more to report, I thought I would share a poem.  This was read when Don's Aunt Donna passed away in March.  I was not able to attend her celebration of life as I had just had Ryan by c-section and was down from that.  But I stumbled across the poem again the other day while I was on Pinterest.  I use a lot on this site, but recently I find myself in the Quotes section, looking for the right signs.  This one showed up last weekend:

The Dash Poem, by Linda Ellis
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 the 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 little line 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”

Sunday, November 18, 2012

Sunday Morning

Good Morning,

Not a lot to report this week!  No chemo, a full week in the office....It almost felt like I was a normal person!  Monday was Don and my 7 year wedding anniversary.  We came home from work to a delicious dinner prepared by Whitney and my mom. Just spent some quality time with my family before they left on Tuesday.  I was still pretty wiped from Friday's treatment, but still was able to get some family time in. During the day Monday, my work surprised me with TONS of snacks to celebrate NO MORE CHEMO!  I love my office!  They are a 2nd family to me!  Thursday I saw my counselor and actually didn't cry about anything!  It almost felt like it was not a productive session because I was doing just that good!  I'm sure I need to see it through the good the bad and the ugly, but it felt good to get through a session and be told I'm doing good!  

Friday came and went without much thought of not going to the Edwards Cancer Center.  I can't say it wasn't on my mind because it was, but like other things I have experienced through this nightmare, I feel like the anxiety build up is way worse than the actual experience.  Call me crazy, but I would still go if they called and told me they were giving out chemo like a weekly sales ad.  It just feels like it protects me and right now I'm walking around without my protection.  It also was something I could control by showing up and getting poisoned weekly and knowing it was killing the cancer.  When I'm not getting anything, I feel like I have no control over this stupid cancer until it is removed from my body!  So of course it is on my mind, but emotionally I feel like I'm doing better than I thought I would.

Yesterday my high school girlfriends, Lisa and Megan came up and we shopped!  Oh did we shop!  We hit the mall for ourselves first and then decided to take it serious and headed to the Toy Stores and kid stores!  We didn't get home until after 9 last night!  This is the first year I have really shopped.  Usually Don and I go out and get a little at a time or order on-line.  This was a lot of fun!  I do not think it would be fun if you weren't in the right company since I don't consider myself a huge shopper, but these girls and Whitney made it so special and fun!  Another great memory to put in the books!  And maybe a yearly thing girls? 

This will be a great week since it is a short work week, but also favorite holiday.  Christmas really is, because of the kids, but I do LOVE Thanksgiving for myself.  This year, as hard of a year that it has been, I still see the good in it and have a lot to be thankful for.  Family, friends, work, Doctors, nurses, research, insurance, etc.  So much that I'm sure I'm missing something.  So many new people have been brought into my life like Doctors and nurses that I thought before now would never be in my life and although they were hard for me to accept in, they, like my family and friends, have my best interest in mind and are only trying to help. So for that, I am thankful for them.  

So as much as I want December 6th to be here, I have to say that I am enjoying the down time.  I hope this week is just as uneventful as last and that I can keep my anxiety in check and enjoy the holidays with family.  

Happy Thanksgiving to all of you!  

Love,

Amber

Friday, November 9, 2012

12th and FINAL TREATMENT

I have made it!  Can you believe it?   I started this unwanted journey on June 21st when I learned of my diagnoses.  Well, actually June 19th when I was able to see a Doctor finally about my concerns.  Well, actually a day in late April, when I first initially felt a "clogged milk duct" that wouldn't go away.  Let's just say this has been a long journey, but the part that everyone warned me that would be the hardest is behind me.

I started the chemo journey with my dad and Don at a chemo class.  Learning of all the nasty side effects: hair loss, fatigue, nausea, numbness in your fingers and toes, loss of appetite, loss of taste, losing weight.  The scary list went on and on.  Of those side effects, I took them and tossed as many as I could directly out the window.  Who has time to be tired with 2 kids to care for?  Loss of appetite?  If I have to have cancer, I'm going to eat everything.  This was my initial plan, that I then read about and learned it wasn't the best thing.  But to discuss appetite a little, mine has never gone away.  Nausea, again I took the medicine while I was on the first drug, but after I switched to weekly treatments, the drugs have been so much nicer to me, I have taken anti-nausea 3 times.  That is AMAZING!  I think when people think of chemo, they think of someone hugging the toilet, I NEVER DID!  I could not get past the hair loss at first, but I have come to terms with that and it is growing back at such a rapid pace that it almost gives me something to look forward to each morning when I look in the mirror without anything on my head.  I do still do the shocked look too that I will describe as "WOW, oh my God, it is real, I don't have hair and I do have cancer".  You wake up daily as a cancer patient and hope it was a bad dream.

This past week, I started to get almost every side effect listed above.  My taste buds have been cashed for the past few weeks, but I am a huge fan of spicy foods, so I have been able to keep them satisfied as much as possible.  The fatigue was killer this week.  It reminded me of taking the first round of drugs where I felt like I could close my eyes where ever I was and I was out.  The numbness in the finger and toes.....HOLY COW!  I can't open things well this week and they feel like they are asleep all the time.  This is probably the most annoying thing.  The Doctor feels that since this side effect visited so late, it won't stick around too long and with my age, it will eventually go away, but OH MY!  This can disappear at any time.  I look weird and can't stand it.  So if you notice me struggling, just help me would ya?!  I caught Whitney laughing the other night as I was trying to use a fork and my food kept slipping off of my it.  I laughed too:)  Have to laugh!   I have decided that my side effects may have been around all along but maybe I have been able to block them out.  Who could complain about this stuff 20 weeks ago knowing you have 15 more cycles of drugs to get through?  If you are tired at the beginning of a race, that is going to make the race 10 times longer.  So I do wonder if I am just now allowing myself to say I'm tired or that I'm numb....So maybe I just want some attention.  Sue me:)

It was bittersweet that my dad and mom are here this weekend to complete this journey.  More so that my dad was my partner since he was there at the beginning of this too.  Again, since he was at the initial class, learning along with me and watching me cry because I was so damn scared to lose my hair and lose control of things but mainly the hair.  Then to come today and watch me go through this like watching me do a routine of changing a diaper or something.  I have come so far and I have accomplished so much!  I would still prefer to not add this stuff to my life's bucket list, but I  DID IT!  I am so proud of myself!  And as much as it was not easy for him and my mom to have their daughter do this, I know they are proud of me too.  Probably just as proud of me now as they were to watch me graduate high school and college, or getting married to my best friend or giving them 2 sweet grand boys.  The bitter part is this is not something a parent ever wants for their child.  I know this because as a mom, I would be crushed!  I would be on a lot harder of a drug than chemo to get through that.  So I am just as proud of them!  They have watched me struggle, cry, laugh, scream, crawl in bed with my mother because I was so scared those first few days.  I haven't done that in I think at least 20 years, right mom?  And let's not forget, I think I may have thrown things at first too out of anger, not so proud of this one, but it happens.  Bottom line, they have listened, cried with me and cheered me on!  l remember their words from the beginning when I said I was too weak of a person to get through this, they continued to say over and over: You will beat this.  We have no doubt....YOU WILL BEAT THIS!  I remember this and when I do forget or get scared, I think of it often....YOU ARE DAMN RIGHT I WILL BEAT THIS!!!!

Certificate of Accomplishment that I have Earned through Edwards Cancer Center Today
Mom and Dad This Morning -Dad and I on our way!
Next was Don.  Don took his wife weekly to appointments that half the time I couldn't speak through.  While waiting for a Doctor, I couldn't keep up a conversation and became a Facebook junky because it is easier to look at the crap on there than to talk about our life.  But he sat and continued to push me through this.  he continued to make small talk with me to try to take away the fear.   While he didn't always succeed in this, he was there and that is all that matters.  I know this is hard on him, I know he struggles daily with the same nightmare that I have as he wakes up to a wife without hair, it reminds him that I am sick.  This isn't what we envisioned for our future together when we said "I DO".  Don too has witnessed me kicking and screaming and yelling at him for things he has no control over.  Yes, he might yell back because everyone needs  a good fight and I shouldn't win just because I'm sick, but he has been patient, kind and caring.  That is all I can ask.  I do have to remind myself this is not all about me and he is struggling too.  But he keeps our day to day going and has been just as optimistic as everyone through this.

Whitney....Oh Whitney......I still owe a blog about her, but I was afraid someone would offer her money and take her away.  Seriously can you say Mary Poppins?  Only cuter that that!  Whitney is a mother to my children right now.  I sometimes see the way they look at her and if it were a given day, being the real mom, it would probably make me so jealous, but I know why she is here and I know why they look at her the way they do.  They know she isn't a mom, they know she is an angel!!  She has put her life on hold to care for me, Don, Justin and Ryan.  She is 25 years old.  She I'm sure complains to someone, it isn't me, because she has taken the role of a mother and wife around here and rarely gets down time and if I stayed home and did this and didn't have work, I would have some one's ear about it.  Even when we are home, she is helping out.  I feel so guilty at times, but I know that is what a sister is for and while the job is tough, she knew that going in and I will say it again, I did not tie her up here and force her to stay.  Her departure will be difficult.  While I'm sure she looks forward to going back to a 25 year old, I also know she will miss my boys like they are her own.  She will be mother of the year one day!  But for now, she is aunt of the year! She will get her reward someday!
Dinner for Whitney's 25th birthday

My in-laws Don and Wendy have also walked by my side through all of this.  They have taken on more than anyone should have to this year.  With the loss of Don's sister (big Don, my Don's Aunt) 2 days before Ryan was born, celebrating Ryan's birth and first 3 months and then stepping back into the cancer world!  Why?  That is crummy!  Having to witness their son go through this and be at a loss of words and their daughter in law who was probably viewed as stubborn before all of this.....I went from never wanting to ask for help to needing help at the drop of a hat.  They have always stepped in and have given Whitney the break she has deserved and sometimes this comes with little to no notice.  It is just amazing!

There are many of you I want to personally write about, but that will take me years and although I have those years, I need to get out there!  So I know you get it, but I hate personalizing because I am seriously at a loss for what all have done for us.  I will be and have been paying it forward because I do not know if I had not had to stop to smell the yucky roses, if I would have slowed down some and realized on a daily basis an individual can struggle through so much and sometimes a card, phone call or e-mail can just put that smile on some one's face. I am just so touched at people's compassion, effort and creativity through this.

This road has not ended, as I still have a lot ahead of me, but we are continuing down it.  It is nice to put the chemo behind me.  I plan to keep up on my weekly updates as I think it helps to let you all know how we are doing and it helps me put my thoughts out there.  So stay tuned to Chapter 2: SURGERY!

Love you all!!


My boys giving me a final pep talk before chemo


My good-bye to Taxol today!  FOREVER!!!

Amber

Friday, November 2, 2012

11 DOWN 1 TO GO!!

"You have worked so hard and come so far.  Now look what's ahead.  A finish Line with your name on it.  Only the final stretch awaits you.  So strap in.  Put on your strongest obstacle repellent and stay the course.  You can do it"  

This was posted from Christine McTaggart on my Facebook today. She is my breast cancer pen pal I have spoken about on here.  She is also fighting breast cancer and will start her 12 weeks of Taxol this coming week.  She will do just as well as I did and be on her way just as I will be soon enough.  She has 3 beautiful children and a wonderful husband.  Like me, This  is what is keeping her going daily.  Thank you for our daily e-mails Christine. 

This has been a week of information overload.  I am so glad for this week to be behind me!  A BIG DISCLAIMER, THIS Might make you blush or you may feel like this is WAY too much information.  But I'm trying to give everyone the real outlook on this and trying to do it in true Amber fashion because as hard as this will be for me, I have to find the humor in it and I just don't know how else to say it.  So if you want to skip skip *but you are missing out:) 

Let me start with Wednesday:  I met with Dr. Fine from Northwestern.  He is the plastic surgeon.  We went over the entire surgery but more importantly his part.  He will come in towards the end of a 4-5 hour procedure (around half time) and start the reconstruction.  He will put in the expanders and make me look as natural as possible for my wake up from my wonderful nap.  I don't need to tell him size or exactly what I want or envision as a final product just yet.  First we have to get past the radiation. This surgery is a 1 night stay in the hospital and 4-6 weeks out of work. He will see me the first few weeks after surgery as I will go home with drains that will come out of my arm pit area.  The first week, he will remove 1 drain per side and just check on me.  The 2nd week, he will remove the 2nd set of drains and plan to pump or inject my expanders some to stretch the skin.  Depending then on when radiation starts (it will depend on my healing and the radiation specialist) this may be it.  Once radiation starts, there is not any injections or tweaks made with him.  My next visit with him would be 4 weeks after radiation.  At that time, we will schedule my implant surgery.  Assuming all goes well with radiation, this is an outpatient surgery where they take out the expanders and slip in the implants and BAM!  I have a nice new set of boobs!   Home the same day and 2-3 days off of work!  Then 4 weeks from there, I would go back to his office and have a permanent tattoo of my nipples permanently tattooed on my body, I'm hoping they have a pallet that I can choose exactly what I want!  Maybe like going to get my pedicure where the polishes all have appealing names!   Perfect case scenario right?  But we know there is always a BUT....Now for what happens if this doesn't go as planned: 50% of the time is not so favorable.  The radiation can cause the skin to tighten which causes the expanders to not sit right / natural or cause pain for me.  If this happens, the 2nd surgery will not be as delightful.  Instead they will have to graft skin off my back (under my bra line) and put this skin on the lower part of my breasts to allow for more room for the implant.  This will be a 2-3 night all paid stay in the hospital and will require a 66 2/3 percent all paid leave from work for 6 weeks minimum!!!  NO!!  We won't know until after radiation of this is required.  

Next was this morning meeting with the Surgeon, Dr. Bethke.  He started by doing an exam and was so impressed with the results!  He told us something that we were floored by.  He felt that the tumor measured more like 10 CM when I first came in that scary day in July and now it was around 4 CM.  So still huge for tumor, but See how far I have come?  He is more than confident that he can get in there and "scoop" it out.  This is the word they all refer to as taking out the tissue.  I hate it, it reminds me of ice cream.  YUCK!  I digress, but he is so confident and this made me feel awesome!  He does not want another breast MRI before surgery because the best way to get true size is to take it out.  So no yucky tests before surgery.  Just pre-op blood work.  Thank you Sheila again for referring me to him.  I knew you were in my life for a reason, even though that freshman year in college you corrupted me and oh, don't forget, mistakenly thought my mother was me and called her a bad word as she was hard at work making my bed after a weekend at home. I have asked her through all of this to forgive you and I think she has.  Count yourself lucky!  Again I digress!  

Before surgery they will go through my nipple and inject a dye that will lead them to any weird lymph nodes during surgery (Sentinel Lymph node biopsy) They will remove these nodes and send them off to pathology while I'm still napping.  They will have the results before the surgery is over and if they are positive or the Surgeon has concerns he will decide there if an Axillary Lymph node biopsy is required, this will remove the lymph node pad in the armpit area and could cause permanent Lymphedema (swelling of the arms)  This would stink to have new implants in my arms and in my breasts, but this is worst case and I'll still take it over this stupid cancer.  I will then meet with him around a week after surgery for my healing and to go over my pathology.  If pathology is back before my appointment, he will call me to discuss.

I then met with his nurse.  She showed me the drains that I will have for the first 2 weeks and a quick over view how to care for them.  She also gave me this way sexy camisole that zips up and has cool little pockets stored in them where I can keep the drains so they don't get in the way or cause problems with the little ones.  It really was a great invention and I want to google the inventor and send her a kudos!  It really isn't bad looking, but the purpose is wonderful.  The nurse then told me since the plastic surgeon is taking a vacation the week Dr. Bethke would prefer to do the surgery (week of December 10th) we were looking at around December 20th.  I begged her to see if we could go to the week before.  I agreed to get his favorite treat and bring it in.  She said she would check with him and call me later that day.  (I'm going to leave it at that so you feel the anxiety about this date that I had today)

We left there and went to see Dr. Hantel at the Edwards Cancer Center.  He walked in the room and said "Long time no see".  I replied with "I could really do without seeing you today" and we both laughed.  Again, let me say I am sure he has a great personality, but to get the Oncologist to laugh just makes my day!  He then felt and was more than pleased as well and felt has shrunk in all to a 1/4.  Next we chatted.  I then braved up and asked the hard question.  Well, I actually whispered it.  "What happens if it comes back".  I know he knew what I meant but since he knows me so well and knows I'm on a need to know basis, he used my whispering to ask me 3 times, "what are you saying, I can't hear you".  So the third time, I got it out in a normal tone, what if they don't get it all or it comes back and I couldn't hold back, I started crying and said to hurry before I changed my mind in knowing the answer.  Then out of no where, my phone rings and it is Northwestern.  So Don hands me the phone and it is the nurse telling me to report to surgery on DECEMBER 6th at am.  So not only did I get my date, I get to be the first surgery of the day!  So back to Dr. Hantel, he reaches for, only the best for his best patient, the nice Kleenex and says to break the silence and get back on track by saying "all patients complain about my shitty Kleenex so here is the good stuff" and it did click with me, I'll bet people cry so much there and their Kleenex are the hard stiff ones.  Probably cheaper, but I did tell him, they should invest in the good stuff.  So back to him answering my question.  He told me in all seriousness, he isn't concerned with the cancer coming back in my breasts since they will be gone, but he is concerned because of it being Triple Negative that we have to really watch for this cancer spreading to another part of my body.  His plan will be to see me every 3 months and do blood work in between.  I need to watch for symptoms that last longer than a week.  This includes a cough or ache or problems walking, etc.  He said this would warrant further testing (CT, MRI or Bone scan)  This stinks because it would more than likely confirm it had spread,  but then he will come up with a new chemo treatment and the fight would re-start.  That isn't good news, but he said it and I listened.  This is important the first 2 years again.  After the 2 years, my chances of recurrence anywhere lessons, but still is not normal until 5 years.  God please!  Even though I find humor in this week, that is so scary, but I knew this and it is now out there.  We just have to pray that this won't happen.  His only advise was a baby aspirin a day, healthy diet and exercise.  So this is what I will do.  I just have to keep up the fight that I have done so far with chemo.  It will be hard because I have to admit, I have never had to work for my awesome body:0  but in all honesty, I haven't been a huge exercise person, but I HAVE to be and I will!  We ended it by me asking if he is bringing treats next week for my final treatment or am I.  I didn't get a true answer from him.  So maybe he will surprise me!  I will follow up with him a month after surgery right before radiation.  For the first time in awhile, I am excited about next week and envision leaving there.  It will be hard, and sad because the nurses, Dr and staff are my friends.  But I can't say that I feel like I will be in a big hurry to go in and visit them.  

Next was Taxol and Carbo.  This was uneventful.  And then home.  This was a very overwhelming day / week.  The good the bad and the ugly.  But I made it!  I got the hard answers to my questions and found some humor in all of it.  I feel at peace.  I don't know my outcome, but I kind of do.  I feel like I'm going to do this and make it.  But I still have the fear that what if I don't.  The only way to explain if I am taken away and please go back to the humor part because this is hard to say: If I can't make it out of the darkness, I can at least say that because of this yucky cancer, I have learned to live my life and not take for granted my days here.  Not everyone nor did I really do this pre-cancer.  I have to remind myself that something could take me out at any given minute and what if I didn't have this warning call to make me wake up and enjoy the day to day more? I would regret that so much more than having this time to enjoy every minute of my life.  So take that advise and instill it into your own life.  We all sweat the small stuff and shouldn't.  If your not happy, fix it!  Life is too darn short!!!  But again, I'm going to fight this battle and win!  So my message above will be instilled into my life for a long long time too.  I will find myself living a long long life, but I think it will be much more happier if I can always remember what I just typed.  

So that is way too much information for tonight and I need to relax.  Good night!

Lots of love,

Amber