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!