Pain can be a tricky thing

      Well it has been almost 2 weeks since my surgery and I am felling a little bit better each day.  The only pain in my head is sometimes when I forget and raise my eyebrows I get a quick sharp pain on the top of my head.  I have a dull constant pain near my left temple as well.  Most of my pain over the past 4-5 days has been in my back.  Sometimes it gets so bad I can't even move.  I'm not quite sure what this pain is from, maybe it is caused by the spots they saw on my lungs or maybe it is just because I have been laid up for 2 weeks and need to sleep elevated still.  Whatever it is, it can get pretty bad.  The pain meds they have me on help but I hate taking them at all.  When I do take them I do feel better but I also feel pretty loopy so it would be really nice if the back pain would go away all together.

       I have been trying to walk as much as I can and have a pretty good "route" throughout my downstairs and back yard.  I am also trying to get out everyday to get stuff done and keep up with "life" even though I am still not driving.  Today we went to the movies and out to lunch all 5 of us, it was a good day.  I still cover my head when I go out in public just so I don't scare anyone with all of the staples, I use a bandage and cover that with a headband.  Think of it as a cross between a wounded civil war soldier and Olivia Newton John.  Every time I get ready to go out I break out singing "Lets Get Physical".

      Sleeping still is a bit of challenge, I can't seem to get more than 3 hours at a time.  Being down for that long is also hard on my back and I wake up pretty stiff most mornings.  I went in for a biopsy on Friday for my lymph nodes on the left side.  It was pretty funny when I got there all of the nurses seemed to know my story and were shocked that I didn't roll in, in a wheelchair.  I was like really a wheelchair.... I don't think so.  The biopsy went well and I didn't have too much pain after, I was just generally sore and had to ice my left side for 5 hours after the procedure.  They did the biopsy using a ultrasound  and a very large needle.  They were able to get 4 good core samples from the enlarged lymph node.  It is all so fascinating to me what they can do with testing, I watched the entire process and of course took pictures.  I hope to hear from the doctor in the next few days with the results of the biopsy.  The pathology report will help a lot in forming the plan for step 2 in my process.  It will tell us the stage, chemo "cocktail", radiation plan as well as if more surgery is needed.  I was glad to get the biopsy done when I did.  I felt like I was missing an opportunity to do something while I was healing from surgery.  I'm not one to sit idle so anything I can do as far as scans, tests or appointments.... LETS GO!

      I am going in on Tuesday to get my staples taken out and to see the surgeon.  I have no idea how they are going to take them out, all I care about is that it does not hurt.  I can't wait until they are all out because I can wash my hair.  I have not been able to use any product on my hair and all I can do is let the water fall over my head.  There have been some pretty funky hair days over the past 2 weeks.

     I am just now getting caught up on my thank you notes so please forgive me, they are on their way to all of you.  Saying thank you just seems so little in response to all of the AMAZING love and support I have received and continue to everyday.  It is so overwhelming and humbling to be on the receiving end of all of it.  From all of the help with the kids to the meals that are delivered everyday and all of the cards, messages, prayers and visitors it just leaves me speechless, something I rarely am.  I will keep you posted on biopsy results as well as any updates to my treatment plan.  As always, love to you all and thank you for everything!!!!

Strength, focus and clarity

I have been wanting to send out an update for a while but am still trying to wrap my mind around all that has happened over the past 6 weeks.  There is so much to talk about and so many things to check off as I go.  I have always been a list person and its like I want to project manage my way through this process.  I have no doubt in the outcome of this journey... NOT ONE DOUBT and I want to get busy moving forward.  I know the process is going to suck!  Its going to hurt, its going to be hard, its going to be long but I will be a better person on the other end and my family will be eternally blessed having gone through it.

I really was ready the day of surgery and was surrounded by my family and friends (even at 5:30am) once again with more support than I could ever ask for.  The surgery went very well.  They got all they wanted and the entire team was so happy with the results.  I went in at about 7:30 Monday the 10th and it lasted just under 3 hours.  They expected my left eye to swell shut like Rocky and the bruising to be pretty bad but for the most part it has been minimal.  I stayed in the hospital until Thursday, my biggest issue was my heart rate, mine is very slow.... very slow.  They had to turn all the alarms off because my resting heart rate is under 40 and at one point got as low as 27 beats a minute.  I am strong and healing everyday getting ready for the next thing.  I am laying low but still doing "things".  

I have had a steady stream of visitors and it has been nice to see people although I get tired pretty fast.  I was not sure who would want to see me since I have to keep the "cut" uncovered for best recovery and it is not pretty.  I have a cut about 8 inches long that goes from the middle of my forehead down to the left in my hair line all the way down in front of my left ear.  They shaved my head all along that side so everything looks off balance.  When I got home and took the bandage off I was surprised how big the cut was and that it was in front of my ear.   It looks like once my hair comes back in it will totally cover the scar and in a few years the way I do my hair you probably won't even see it at all.  I was able to get my head wet today for the first time and it felt so good just to let the water fall over me.   All I can do is let it run over my head, no soap or rubbing and pat dry but at least it can just fall on my head for a bit.  I have 35 staples perfectly placed along the cut and they will come out the Tuesday before Thanksgiving.  


I am still taking steroids and anti seizure meds along with a few other meds and of course something for pain.  The pain is there but no where near what it was before.  The pain now is mostly pressure and around my entire head.  We are now on kind of a dual track for step one, first is surgery recovery and healing.  To physically recover from brain surgery and to make sure I heal and gain strength for other track of radiology.  My radiation is called Gamma knife and will be done on 12/10.  It will be an all day appointment with the actual radiation only being a onetime zap for about 20-30 minutes.  The reason it is all day is the mapping, the targeted treatment is so mathematically calculated it slows the process down so much.  The good news is that with this treatment it is only one day and I won't have many side effects like skin burns or a lot of discomfort during the procedure.   

I am so thankful for this approach, radiation is scary to me, much more than chemo ever was so the fact that this is a one time thing makes me happy.  When I went through all of this last year I won't say it was easy but I feel like it was just to prepare me, educate me on the world of cancer.  I have no cancer in my history.  My family has never had to deal with anything like this so last year really was an opportunity to learn.  Now I am ready to fight!  Fight like I only know how.... with everything I have.  I am a pretty tough person by nature and usually get what I want and I look at this in much the same way.  I will get exactly what I want!

 I GOT THIS!!!!!  I want to scream from the mountains their is no doom and gloom here!  We are strong! We are fighting and we are moving forward one day at a time one foot in front of the other.  I have the strongest support around me.  I have the best husband by my side every step of the way and the 3 best kids who KNOW how strong their mom is and have every confidence in me.  I have read every text message, FB post and email.  I have read every card and listened to every voicemail.  I feel the thoughts, prayers and love every minute of every day.  I may not be responding to them but please know I read them all and they mean the world to me.  

I will continue to post as I battle this.  Thank you for all the love and support.  Stop by for a visit if you would like I would love to see some smiling faces.

 

So much to update and so many things to deal with

Well here we are again, again somewhere I never thought I would be.  We had a great walk and overall our team of 8 AMAZING ladies raised over $17,500.  The weekend overall raised over $4.2 million just in Santa Barbara alone.  I am again so thankful for the amazing support I have had through this entire  process.  It is so hard to look back on such an amazing weekend of strength, love, support, emotion and bonding from where we are looking now.  This process is such a roller coster with many ups and downs as well as unknowns but NOTHING can take away that weekend and what we accomplished.

When I returned from the walk I had some swelling on my left ankle and it was painful to walk so I made an appointment with my doctor thinking maybe the chemo was slowing my recovery or something. I also was having some headaches so she ordered a head scan just in case, the headaches would come and go and get so bad at times I would have to stop what I was doing and just sit.  Triple negative breast cancer has a tendency to reoccur in the brain, so I went to the scan the week of Halloween and had a follow up with my Oncologist on Halloween.  Around this same time I felt a "lump" in my left armpit that didn't feel right so I added that to my list of things I needed to have looked at.

Why is it that when you look back at things they all become so clear.  It's like I want to stand on the mountain top 6 weeks ago and smack myself right in the face and tell everyone I came in contact with that something was WRONG and I knew it.  I just didn't feel right and knew something was going on but didn't know how to express it or how to say it.  It all just seamed like a bunch of small things that didn't really add up to anything but I had a gut feeling that something was stirring.

The scans confirmed a few things and here is the list.  The cancer has spread to my brain and I now have a tumor about the size of the quarter on the front left side.  I also have 3 enlarged lymph nodes on my left side that need to be biopsied.  I have a few spots they want to follow up on, one on my lungs and some abnormalities showing on my left femur as well.  But more on all of that later, we have to take it all one step at a time and right now we are starting with the brain.  I was admitted to the hospital on Halloween and stayed for 4 days. They have started me on a high does of steroids as well as pain meds to help contain the tumor and manage the swelling which is causing much of the pain.  Some of the other things I am dealing with is balance I get very dizzy very quickly, lack of appetite, confusion and speech, such as not really being able to say what I want to say.  I know the words but can't get them from my brain to my mouth, it's like I lose them on the way.  So please don't judge me that my "writing" is the way it is.

So here is the plan, I spent the day at the doctor today having meetings with the treatment team, neurosurgeon, radiologist and nurse coordinator.  I will be going in for brain surgery on Monday (really brain surgery) something I never thought I would be saying, let alone doing.  I will be in the hospital for 3-4 days for them to remove the tumor and manage the swelling.  After I have recovered a bit from the surgery I will have brain mapping done for the next steps that involves one large dose of targeted radiation on the area of my brain that the tumor existed.

As always the hardest part of all of this is talking to the kids about it, not knowing how much to say but trying to keep them as informed as we thought they should be.  We know they are worried and they are getting older and understand more. We want to be the ones to tell them and not have it be a subject they can't talk about or worse, they do their own research online.  If you know my kids or not I just ask that you keep them in your prayers or if you see them just give them a smile.  I am not afraid, I am not scared but I won't say I am not nervous, they are cutting into my head.  I do feel thankful that I have been through this process before, we don't have all the answers and yet need to make decisions on the answers we do have.  Please bare with us at this time as we deal with it all in our own time. I will blog as much as I can to keep you updated on my progress but will be doing my best to stay off of my phone and Facebook. I only hope my journey can help one person!

Love to you all!

365 days....

Well today is my Cancerversary.  One year ago today I got the phone call that confirmed I had breast cancer.  I can still go back and put myself right back in that place sitting in my office when the doctor called.  It still is very surreal to me and I still don't feel like a survivor.  I do look at things differently now and take a bit more time to just "be".  This whole process has given me such a different outlook on life, with everything.  Things that used to get me worked up or stressed are still there but I just deal with them differently.  I choose to focus more on my family and making the most of every minute.

I do have fear of recurrence but it does not consume me.  I have no control over if it comes back much like I had no control over getting it in the first place.  I can't let myself live in that place of fear and worry.  It is just not productive for me or anyone around me, especially my kids.  They need to see that I have beat this and that I am going to be okay.  To be honest it is just not me to focus on the negative and borrow worries.  I was taught long ago that I should not worry about things I can't control and this is just one of those things.  I can only deal with what is actually in front of me and as of now I "had" cancer but it NEVER had me!

I have not been blogging that much about the reconstruction process, it is just too personal I guess.  Something that is so visual just kind of speaks for itself.  If you were to meet me today you would never know I had cancer, I just look like anyone else with a short haircut.  I have had one surgery back in May and 4-5 small "procedures" over the past 2-3 months as well.  My next surgery will be sometime in October but I am not sure of the exact date yet.  This will be that last big surgery I have and will only have 2 more small "touch ups" to do early in 2015.  I am really looking forward to it all being behind me and I don't have the next thing to plan for.

My hair is coming back and like I said it just looks like I have a short hair cut.  I have very curly hair so I have already straightened my hair twice and will continue to do that until it gets to a length that pulls more of the curl out.  I am not a big fan of my short hair but I am just glad it is coming back.  I still take my Biotin everyday as well as use my special shampoo/conditioner and it seems to be effective, as far as I can tell.  I just don't think it will ever be fast enough for me.  I don't think I will ever grow it as long as it was before I got sick but I know I want it a least to my shoulders.  I have had quite a few folks tell me that they like the short hair and it is very easy to deal with but I just don't think it is something I will ever get used to.

For those of you who don't know, I am walking in the Avon walk for Breast Cancer this year in Santa Barbara with a few of my family members.  We will be walking 39.9 miles over 2 days in and around Santa Barbara and ending in Carpenteria the first weekend of September.  My mom and I did this walk 16 years ago when it was 75 miles over 3 days but this year is going to be a totally different experience for me.  I know it is going to be a very emotional weekend and I am a little anxious about it but am so happy I will be surrounded by so much love and support from my family.  So far our team has raised over $9000 but we need to get to $14,000 before the walk.  If you want to help please go to this link below to donate directly.

http://info.avonfoundation.org/site/TR/Walk/LosAngeles?px=7472735&pg=personal&fr_id=2365

Thank you to all that have already donated and supported me and my team.  I will update you right before the walk and the day after as well to let you all know how it was.  I am looking forward to a GREAT weekend for sure!!

As always, thank you for all the love and support!

Next steps....

I had my pre-op this week and I it went well.  I had some tests to do and an EKG.  I still have to do an Echo Cardiogram but all is well and I will have my first surgery on April 28th.  The only thing that I got from the whole pre-op is that I need to lose a few pounds.  I figured out that I have put on about about 10 lbs in the past 7 months.  I think it has been a combination of the steroids, but mostly because I just did whatever I wanted and ate whatever I wanted over the past 7 months.  I figured that  I could use all the comfort I could take and did whatever I thought would bring it to me.  I ate chocolate.... EVERYDAY and mashed potatoes were my go to meal so no wonder I find myself in this place.  I can only hope that I can get back on the "wagon" and get back to where I need to be.

My expander surgery is set for the 28th.  I am not nervous at all just wondering what it will be like when I wake up.  I have see a few videos on You Tube about the process and it all seems so strange to me.  I really don't know what it will be like.  The doctor said to expect a fair amount of pain since they have to cut through quite a bit of muscle.  I won't be able to lift my arms at all for at least a week to 10 days.  All I know is that it is the first step at getting back to normal.  I should have the expanders in for about 3 months so my next surgery should be around the end of July.  It is weird that it will be almost exactly one year later I will at least look normal again.

My hair is coming in..... straight as a board.  It is so weird to me, I hope it starts to curl soon because I  don't have the first clue what to do with straight hair.  I am just glad it is coming back.  I have gone without a hat for the past week and actually got a hair cut to "clean up" around the edges.  I am still taking a ton of biotin and using the special shampoo and conditioner my mom got me so I hope it is all helping because I really want my hair to come back quickly.  I have met a ton of people who have kept their hair short because it is easier but I really don't think I will be one of them.

I can't believe that this blog has over 18 thousand hits.  It is amazing to me that so many people have been following my progress and I almost feel guilty that I don't update as much as I did in the beginning.   I hope to update more but don't really know how much detail to share, now that I am getting into the other side of things.  Thank you all for the continued support!!!!

Moving forward

Well I have been back at work for 2 weeks now and everyday gets a little better.  I still get tired a lot and feel like I am constantly a step or two behind.  It's funny how you get so used to being so busy all the time and when you get out of the habit of being on the run you wonder how you got it all done.  I have always said that the busier I was the more I got done, I just hope my energy levels get back to where I can allow myself to be that busy again soon.

I still am in quite a bit of pain, my joints and muscles are so sore, like I had a really hard workout the day before.  There really does not seem to be anything that relieves the pain so I just try to grin and bare it and hope it gets better soon.  My hair is coming back slowly...I am still in a bean all day everyday and it will be interesting to see when I decide to go without.  I don't think it will be any time soon.  My hair is coming back nothing like it was before, it is straight!  I don't get it really, everyone I talked to said their hair came back curly so I really don't know what to make of this.  It is also is a lot lighter, who knows what it will look like in a month but I hope it starts to curl soon because I really don't know what to do with straight hair.

I have heard back on all of my scans and they have all come back clear.  The only thing I am dealing with is some fluid around my heart that they will monitor every 30 days.  They call it a thickening and say it is caused by the Taxol which was the type of Chemo meds for my last 12 treatments.  My doctor says that I still am a medical mystery because the joint and muscle pain usually comes during treatment not after and that the thickening is caused by a different type of Taxol.  All I know is nothing with me seems to be normal and I just take it as it comes.

My biggest issue still seems to be between my ears.  I attended another memorial service for a friend this past weekend and the guilt is still there.  Even though it wasn't the same type of cancer it still makes no sense to me why things happen the way that they do.  I know I just need to keep moving forward and make them all proud but most days that is easier said than done.

I have had a few appointments to begin my reconstruction and as much as I know I want to do it, it is a very strange place I find myself.  Having never been a girl who needed to think about cc's I just have a tough time envisioning what the end result will be.  I have a lot of friends who have gotten some "girls" and they all look great!  I think if you choose to get them you have a certain mind set and it is a choice.  Having always had them it has been kind of nice not having them but I know that I will feel much better when I have one less thing that screams I have breast cancer, not to mention when I go to put a bathing suit on this summer.  I have what will be the first of 3 procedures on April 28th.  I hope to be done with all of them by August.

I know I have not been posting as many updates, I guess it is just a reflection of the speed things are now happening.  I still am hearing from many of you and feel all of your support every day.  Thank you for all that you do both seen and unseen.  Love to you all!!

Return to a new normal

I know it has been a while since my last post, sorry about that.  I had my scan done 2 weeks ago and all is good and last week I had an EKG done as the last test before my appointment with my Oncologist next week.  I will get the results of the EKG tomorrow.  Peter and I snuck away for a few days up to Carmel and it was so nice not to "have" to be anywhere.  We spent most of the time walking through town, on the beach or trying to catch up on movies before the Oscars.  We saw Nebraska, American Hustle and Wolf of Wall Street.

I am going back to work this week and it will be nice to get back at it and get back to my busy life but I wonder what it will be like to wear a suit with a beanie.... I guess I will find out soon enough.  I am going to ease my way back into the daily grind and concentrate on only part of my area at first but I am sure I will be sucked back in soon enough.  I also am getting back in the swing of the balance between home and work as well as well as all the kids activities and getting dinner on the table as well.  I really do love a busy life so its a very good thing for me.

I have begun the process of my reconstruction and the one thing I have learned is that this is going to take some time.  After dealing with the speed of cancer and all of my treatments it is a bit strange to be dealing with the other side and me having to the proactive one.  It is a whole new world to me and I have a lot of research ahead of me.  They say that the side effects from chemo can last up to 6 months after you stop treatment, luckily most of mine have begun to subside.  I am beginning to get my taste back a bit, some days are better

than others.  The last couple of days I have felt like I have had a bit more energy but it seems to come and go, I am still not sleeping as well as I did before this all started but it is getting a little better.  My hair is starting to grow again and now I really feel like I look like someone with cancer.  It is coming back SLOWLY and is still pretty light, funny thing is it is pretty straight too. I am in quite a bit of pain in my joints and I originally thought it was because of all the walking I have been doing but the pain is not only in my knees.  The pain seems to be worst in my finger joints and elbows but spreads to my back, shoulders and legs.  I am beginning to get my taste back a bit, some days are better than others.  The last couple of days I have felt like I have had a bit more energy but it seems to come and go, I am still not sleeping as well as I did before this all started but it is getting a little better.  My hair is starting to grow again and now I really feel like I look like someone with cancer.  It is coming back SLOWLY and is still pretty light, funny thing is it is pretty straight too.

My biggest side effect seems to be between my ears.  I have now lost 3 friends to this ugly thing called cancer and I struggle with the survivors guilt every day.  I constantly find myself asking why them and not me.  These friends were all strong, lively people who had a great outlook on life were very upbeat and positive and fought hard.  It just makes no sense to me at all.  It makes me so sad and can't imagine what their families, but mostly there kids and spouses, are dealing with right now.  My heart aches to think about it and my thoughts wonder to what if I were in there shoes.  I get so sad to go to that place and think how my family would be dealing with it all and it just makes me so sad.

I continue to feel better, its funny that I didn't realize how crumby I felt, truly bad,
even before I was diagnosed.  Now that I am feeling better I can look back and see the signs of how bad I was feeling but just chalked it up to being a tired mom just like all of my friends.  Thank you all for all of the continued support and as I draw closer to my ned surgery I will keep you posted but maybe with a little less detail.....LOL.