Wednesday, August 27, 2014

Month FIVE of chemo is done

Five Months of Chemo - DONE!

So my last post was sharing good news of my last MRI.  Still so HAPPY about that.  We got that news on a Thursday and that following Wednesday we were supposed to be flying out to Napa for an early anniversary celebration.  Instead we got the news on Saturday that my dad had a heart attack.  I didn't even need to ask Jamie, I just immediately canceled our airfare and started planning with my sisters to see how quickly we could get up north to be with mom and dad.  They have been there for us through all sorts of stuff and no matter how busy, tired or stressed they are.. they show up immediately willingly to help wherever needed.  It is no different with the roles reversed.  Abi was able to fly in with Piper from Phoenix the very next day Abi, Kim, Piper and I were headed to Marshfield for the week.  

Dad had NO idea we were coming... we texted him this photo saying we were on our way.  He was pretty happy to say the least. 

We ended up staying Sunday through Friday.  Dad was given blood thinner when he first got to the hospital so they weren't able to do the by-pass until that was out of his system.  So he basically had three full days to sit and wait and think about having the surgery.  Not an ideal situation.  Thankfully he had his three daughters to help pass the time.  Other than the whole heart attack/hospital aspect, it felt a little like a family vacation.  Just sitting around talking and laughing about old memories.  If you are ever in the area, I HIGHLY recommend Hotel Marshfield.  We got a suite for the week for like $130 a night!  Had a separate bedroom and family room, kitchenette, great outdoor pool area, nice restaurant...it was a great place.

Thankfully Dad's surgery went well, it was a long day of waiting and we were all nervous because we just haven't had the best medical luck lately but everything went perfectly and if you know my dad, you know he is recovering way faster than expected and is already back up and at it.  It takes a lot to keep us Tuskowski's down.  :)



 Want to give a big thanks to everyone that helped watch the boys while I was gone all week.  We are so thankful for such a strong support system of family and friends.

I got home from up north on a Friday and started my chemo that following Monday.  Not sure if it was the stress of my dad's stuff the week before or what but chemo KICKED my butt this month BUT I made it through.  Got some rest over the weekend and was pretty much back to 100% yesterday.  

So FIVE months of chemo are officially DONE!



Hard to believe that after next month I will be HALF way done, unless we go for the two year chemo game plan. We have another MRI in a month and REALLY hoping that might show the tumor has shrunk even more but as long as it's not growing, I am not complaining.  


Hard to believe that summer is coming to an end.  I was going to post about Owen's kindergarten open house but I may leave that for a post all on it's own next week.  Too much type, I am so proud of that little guy! It's been a long road to get him to where he is and I couldn't be prouder of him.  More to come on that next week. :) 

I had a great summer with the boys.  Had a lot of good days and some really long not so good days.  :)  I would be lying if I said I wasn't a little excited for them to start school.  Owen will be in kindergarten all day and Jacob goes to school/daycare two days a week.  Did you hear that... I have TWO days a week to actually get caught up on photography, clean the house, etc.  Maybe I can actually sit down and enjoy a show at night instead of working every night until midnight.  Gone are the days of lounging in our pjs watching movies until 10am but I am ready for the morning chaos of getting the boys off to school, the repeating over and over to get dressed, brush teeth, find your shoes, eat your breakfast, HURRY UP, WE ARE LATE, LET'S GO!   



I am also excited to get some one on one time with Jacob.  It will be just me and him Monday, Wednesday and Friday.  He has really turned into a little character latel AND a chatter box who repeats EVERYTHING you say.  We are closely monitoring what we say around this little ball of fire.  I am looking forward to trips to the zoo, playing legos (his new favorite thing) and whatever else this crazy guy has in store for me while his big brother is off at school.

 Thanks again to everyone that is following our journey.  Enjoying our last few days of summer and looking forward to the long holiday weekend.  Be back Tuesday with a first day of kindergarten post.

Night!



Thursday, August 7, 2014

MRI RESULTS WERE GREAT!

We got good news!!!!

Had my MRI this morning.  For some reason I was really nervous about this MRI.  My past ones I always went into with confidence but this one was different.  I had been dreading it all week and just had a bad feeling about it.  I don't know if it is because we leave for vacation next week and I was scared of getting bad results before leaving or the fact that things had been going so well lately that I felt like we were due for something bad but I just had a bad feeling.  

 For those that aren't all caught up on my story, in December I woke up in the middle of the night with a numb foot, within a few minutes I suffered a grand mal seizure and was taken by ambulance to the hospital where I was diagnosed with a very large brain tumor.  My sister Kim and Jamie (my husband) immediatly had me transported to froedtert where I underwent brain surgery the very next day so they could get a good sample of my tumor for a biopsy.  My tumor was first labeled a grade 2 and was later labeled a grade 3, there is still some questions about which grade it truly is but treatment for either is the same so I decided I did not want to know the definite answer.  Since then I have undergone 6 weeks of radiation and 4 months of chemo.  I am currently getting MRIs every 2 months to monitor the tumor.  This morning was another MRI day.

I had to go to the Cancer Center for bloodwork and my MRI first thing this morning.  Jamie stayed home and got the boys dropped off at summer camp and then met me before we met with my neuro oncologist for my results.  She walked into the room and immediately said "scans look GREAT!".  I can't even put into words the relief and happiness I felt.  Most of the time I can almost forget I have a brain tumor.  Other than the fact that I take chemo five days a week and have to take seizure meds twice a day, I am just a normal stay at home mom.  My days consist of taking care of my boys and they keep me BUSY.  BUT the days leading up to scans are filled with anxiety, fear, tears and stress.  I am not even sure I can explain it.  I have made the choice and made it clear to all my doctors that I do NOT want to know the expected life span of someone with my diagnosis.  I HATE thinking about dying, leaving my boys, not being the one to hug them good morning and kiss them good night every day.  I hardly EVER think this way, I don't allow my mind to go there but the days leading up to tests are different.  It's virtually impossible NOT to think about it.  No matter how hard I try, watching Owen brush his teeth, something so simple is enough to make me sob wondering how many more time I will be able to watch him do it.  It sounds crazy but it's like this about every little thing you see your kids do makes you wonder how long you will be there for them.  Will this week be the week you get the news that your tumor has become aggressive and it's all downhill?  Will I be getting really sick, become scary to my kids? I could go on and on but now I am crying again so I will stop!

Then you get the news that the scan looks good.... it's like a million pounds being lifted off your shoulders...you feel like you can take on the world...you can do anything...you want to run and grab your kids and hug them for a really long time.  It's just a high that I have never felt.  We were told going into radiation and chemo the goal was to keep the tumor stable. We were told that we should not expect it to shrink, our goal was simply to keep it from growing.  WELL today's scans confirmed what we kind of thought the previous scans were showing... that the tumor is VERY slowly but surely SHRINKING!  You read that right, it is shrinking!  When we look back to January scans and compare to today's scans the tumor is every so slightly, but NOTICEABLY smaller!  This is literally the best thing I could have heard today.  That the tumor is responding to chemo!!!  That I am kicking this things ass... I GOT THIS!  

  I want to thank everyone a million times over for all the love and support we have received since December.  It has helped us through some really dark times.  I am just so beyond happy right not I can't even express it enough.  I can breath for a few months, relax, enjoy my family without having crazy thoughts.  I can now focus on getting Owen ready for kindergarten.  We are currently trying to decide what kind of braces he needs, his current ones are too small and we are thinking we might want to get taller ones.  He goes into the cerebral palsy clinic at Children's next week and hopefully they can help us decide.  I need to get him back in for another round of neuro psych testing and need to circle back up with his neurologist to talk more about testing he underwent earlier this year.  I can also focus on NORMAL mom stuff, getting some cute new school clothes for Owen, stressing over the pinterest lunches I will pin but never make him, getting school supplies.  Even though I will miss Owen as he goes to school five days a week, I am really looking forward to one on one time with Jacob.  It's going to a be a GREAT rest of 2014!

I am so thankful for all the support.  I am SO SO SO thankful for great results we got today.  Some people question why I don't want to know 100% if it's actually cancer or what my life expectancy is but honestly, having a bit of unknown is what keeps me sane, lets me know I am still LIVING!  If I knew exactly when this tumor would take over I know I wouldn't be freaking out over each and every test BUT I also would NOT experience the feeling of relief and happiness I did today.  I don't mind a few days of depressing thoughts to experience a high like I had today, a high that Jamie had today, that so many of my family and friends had today when they heard the scans looked good.  That is truly what life is about... highs, lows, being there for each other in the worst and best of times.  Life for the most part of boring filled with these peaks and valleys.  I feel we maybe have hit a few more of these valleys in the last few years than most but we have learned so much and I am so grateful.  When I got the boys home from summer camp I held Owen in my lap and hugged him. He has no idea what mommy is going through.  I hugged him and just thanked God for everything.  Then Owen looked at me and said "mom... i have something for you" and then he farted on me and ran away.  It was really the perfect reminder, my number #1 job is being a mom to my silly boys.  I can have some days of sadness but then I need to snap out of it and appreciate the two goof balls I get to spend my days with. Days are filled with lots of different emotions but you can't take anything to seriously, live life, have fun, love those around you, help those who need it, allow yourself sad days but really appreciate the good ones and the most important STAY POSITIVE!

  
I am off to bed!  Thanks again!





Sunday, August 3, 2014

My G.I. Jane Moment



So on Friday Jamie, Owen and Jacob were all going in for haircuts.  I have been thinking about shaving my head for awhile now and just haven't had the courage to do it.  I ALWAYS wear my wig, I wear it pretty much from the second I get out of bed until the second we turn off the lights at night.  I think I have posted one or two photos of my hair starting to grow back in but for those that haven't seen the photos...I would say that I lost about 80% of my hair after radiation.  Radiation kills off any fast growing cells which is great because it hopefully killed off any cancerous cells as they are fast growing but it also makes you loose your hair any place that you had radiation.  Just about my entire head received radiation.  So what I was left with was a patch of hair about an 1" x 1" on the very top front of my head (think really weird ugly bangs) and then the bottom of my head didn't receive radiation so I had the world's WORST mullet ever or best mullet.... guess it depends on how you look at it.  So I have just kept that hair because it was almost comforting just having that small bit of hair even though it was simply tucked into my wig all day, every day. 

Well that small bit of hair was just annoying.  I had to wash it and dry it since I couldn't put the wig on over wet hair.  Owen has still only seen me without my wig the one time  when we were robbed and the wig was knocked off when I was hit in the head.  So any time I want to shower I have to make sure it's after Owen goes to bed or that Jamie is home to make sure he doesn't come barging into the bathroom to see me.  We really contemplated telling Owen about my hair and letting him see it more openly but decided against it.  SO..... finally on Friday I made a quick decision that I would just go to the salon a few before the boys and have them just shave off what little hair I had.  That way I could shower and pretty much put my wig on instantly, it would be cooler without the extra hair under the wig and it can start growing back in and maybe in like a YEAR I will actually be able to just sport my real hair! 

I have heard LOTS of women say that when they shaved their head it felt great, they felt empowered, liberated, strong, brave....I just knew I wouldn't feel like that.  I knew that I wouldn't come out of there feeling like I wanted to yell from the rooftops "I did it, I am in charge, that was amazing".  That is probably a lot of the reason I hadn't shaved my head already. 
 I was totally right about how I thought I would feel.  As soon as I pulled off our road to head to the salon I started sobbing and couldn't stop.  Emily who cuts our entire families hair didn't even know I was coming!  So there I was in the lobby by myself crying.  I knew I could have someone come with me but I just didn't want anyone there with me. I felt like a dork for being so emotional and just wanted to get it over with.  So I stood there in the lobby staring at my phone while Emily finished up with her customer and then when she came to get me I lifted my head so she could see my pathetic face.  She asked what happened and I just tried as best as I could to get the words out "just shave it off before the boys get here".  So we walked into the salon, thankfully the only other people there was the salon owner and her sister and they quietly walked back to the hair washing stations as they knew was happening. 

I took off my wig which I have NEVER done outside of my room or bathroom unless at the doctor and Emily started cutting.  I stopped crying right when she started cutting/shaving.  It wasn't bad but I definitely did NOT feel like this was lifting me up or making me strong.  I felt kind of like.... "meh, this totally sucks...cut it fast so I can put my wig back on and let's PRAY my hair grows back quickly".  It seems so superficial.  With all that we have going on that I would even CARE about my hair, write a full blog post about my hair... but the truth is.. it IS a big deal.  Being FORCED to lose your hair by some stupid sickness you never wanted!  The hair that is growing back isn't like your normal hair either.  Some of it is coming in nicely, other areas that  received more radiation are coming in VERY thin.  There is a large bald spot and scar from brain surgery and another bald spot where the GPS was inserted in the back of my head during surgery. Hair will probably not grow back in these areas. It's not like, oh I just shaved my head and it will start growing back into a "cute pixie" cut.  It's a combination of shaved hair, bald spots, thin strange areas.  I just try not to look. 
When I wear my wig, I can feel normal, feel healthy, walk around and no one even knows... it's like my little secret.  But walking around with a shaved head full of scars from brain surgery.. it's like announcing to world and I just want to be like everyone else.  Have a normal day where no one thinks of me any differently.  That people see me as the same Alison that I was before all this non sense happened! 

I surely hope this post does not offend anyone, I know there are TONS of women that choose not to wear a wig the entire time and I think they are amazing too!  I think everyone copes with things differently, you do what you need to do to keep your sanity, keep your mind in a positive place... whatever it takes.  For me, I need the security blanket of my wig, it allows me to live life without constantly thinking about my health.  It's already on my mind all the time as it is.  Hopefully I won't need the wig forever but for now I do, and that's ok!

The second Emily was done shaving my head I put that wig right back on and haven't really even looked at my head since.  Thank you so much for all the love and support!  Jamie took me out for a nice dinner downtown on Friday and I had a few glasses of wine to help get me out of my funk.  :)  Snapped a few photos before we left.






Can't even tell I shaved my head can you?
(when you read the sentence above, does anyone else instantly think of the movie Christmas Vacation?
"Can't see the line can you Russ?")

Alright, I am off to bed.  Had a long tiring weekend.  Friday was super emotional but had so much fun yesterday photographing the wedding of Owen's speech therapist!  Such a fun day and I was so honored to be a part of Emily's day, she has done so much for Owen over the last two years and was the most BEAUTIFUL bride!

Special thanks to Emily R. for shaving my head.  Sorry for just SHOWING up!  Also thanks for making my three boys look so handsome!  Thanks to Lindsey for helping me with my wigs and a HUGE congrats to Jake and Emily! Wish I could come to Mexico with you.  :)


Sunday, July 27, 2014

Four Months Down!

I'm still here!!!! Four months of chemo DOWN!!!!




No I haven't fallen off the face of the earth!  I am still plugging along.  I finished my FOURTH month of chemo on the 18th of this month.  Hard to believe I already have four months done, hopefully just 8 more to go.  My weekly blood work has continued to look really good and for the last week or so I have felt fricking great!  Not sure if it's the weather, the fact that my kid are getting along better or what but I feel like the OLD Alison!!!!! 

I really think I have been handling all that has been thrown at me pretty well.  Since December I have undergone brain surgery, radiation, chemo, countless blood draws and MRIs but honestly I have felt pretty good.  I have been tired and kind of an emotional headcase but overall not too many complaints.  My biggest issue was just that I felt like my patience was so low and unfortunately the people to probably take the brunt of that is my two sweetie pies Owen and Jacob.  That has been my biggest hang up, having the energy to be the mom I want to be, trying not to snap when they don't listen or when they spill their milk after I asked them 10 times not to play around with their cup.  My #1 job is to be mom and I felt like I was running at 50-60% all the time and most nights I went to bed wishing I would have been more patient, more interactive, less angry with the kids.  BUT... in the last week or so out of nowhere I feel like the old me is back.  I have patience, I am dancing while making breakfast, being goofy and silly while we are at the grocery store, blasting the music in the car, letting Owen pick out 10 million stupid Super Hero books at bedtime and I read them all even though it's late.  It feels so good!  I hope it sticks!  I am really enjoying my days again.

Of course, with this sudden change I also start to question WHY I feel different.  Has the tumor grown?  Shrunk?  Is there a reason that I am feeling different, is it good, is it bad?  Just kind of annoying that all things lead back to this damn twinkie in my head.  Unfortunately that is just a part of life for us now.

Speaking of my head, did you notice my new wig in my dorky "selfie" photos above?  I love it.  She's named "Carley" and I am really loving the new look.  It is a little bit of a process getting used to the bangs and I am VERY annoyed with myself that everytime I say "bangs" or thing about the word I instantly start singing that stupid Ricky Martin song in my head "she bangs, she bangs and when she moves, she moves".  I think that was Ricky Martin right?  Thanks again Lindsey for suggesting this wig to me!!! 

The boys have kept my busy this summer.  Owen just turned 6 and Jacob just turned 2.  So hard to believe.  Owen has been so talkative lately and I LOVE it.  It's usually like pulling teeth to get him to talk but he has been so conversational lately.  Jacob is talking up a storm lately too.  He is talking in full sentences now and it's so fun to hear the two interact.  This morning, Jacob wanted Owen to come play outside and Owen was ignoring him and Jacob said "five minutes, okay Owen, deal?" to which Owen replied "just stop talking to me Jacob".  Brothers!  

Sorry I haven't posted much lately.  Life is so busy.  I have my next MRI on Tuesday, August 7th.. yikes that is less than 2 weeks away.  Praying it shows that this twinkie hasn't grown! 

Here are a few recent photos.  Hope everyone has a great week!





 








 Huge thanks to everyone for all the continued love and support! 

Wednesday, June 18, 2014

Month 3 of Chemo

Month 3 of Chemo! 

Well on Monday I started my third round of chemo.  We had to switch to a pharmacy that mails the meds in order for it to be covered by our insurance so I was nervous that I wouldn't get it until mid week but thankfully it came on Saturday so I will take the meds Monday - Friday this week.  I want to keep it that way because you can't have anything with calories after 6pm on the five days you take the chemo and it would stink to have to do that on the weekend.  Not the end of the world but I was hoping to keep on track with my Monday-Friday schedule.  For now we stay on track and I can still enjoy a beer on the weekend!  My first month of chemo was ROUGH.  I was SO tired I could barely function.  Month two was WAY easier even though my dosage was increased so we kind of figured this month would tell us more of how I would handle chemo for the remainder of the time.  I was hoping it would follow suit with the second month and so far it has.  It's only Wednesday but so far I feel pretty good.  Definitely tired but doing as good as I could expect.  I am able to keep up with the boys all day.  I even did baths tonight, the last two months by the end of the day I just didn't have much left in me but so far this week I am hanging in there.  

For some reason the weeks I take the meds I don't have much of an appetite, nothing ever sounds or looks good.  Jamie is getting annoyed with me having no opinion on what we should have for dinner.  :)  Not sure why he asks me anyways.  If I did have something in particular in mind he always chooses something else.  I decide on chicken, he makes pork.  I really shouldn't complain, he cooks 90% of the meals around here and he's a really GOOD cook.  I am the baker and I don't do much baking in the summer, more of a winter thing.  AND my wig burns when I use the stove, yeah the more I think about it the more I should just let Jamie rule the kitchen and cook whatever he wants.

Speaking of Jamie.... we had a great Father's Day this past weekend.  Had a really nice weekend, my dad came to visit us Saturday night before flying to Phoenix to see Abi, Jordan and Piper and then we were with Jamie's family on Sunday.  I know I mention Jamie a lot but I am SO beyond blessed to have him.   He is the best dad to Owen and Jacob.  They are both already little mini versions of him.  Well Jacob is a mini version of Jamie with my spunk (also know as attitude).  Don't they refer to those types of kids as "spirited".  They copy everything he does.  This past week he was teaching them how to start a charcoal grill.  So cute watching the two boys listen to him explain how to pile the charcoal.  The second the lawn mower starts they are outside picking up sticks to throw in the fire pit.  Jamie does most of the grocery shopping (because he LIKES to) and the boys love to go with him and help unload all the groceries.  Jamie can fix anything and the boys sit and watch and he explains all the tools and what he is doing.  I sometimes envy his patience with them.  Then I remind myself he is away from them at work all day so he SHOULD have patience for them.  :)  Here are a few photos from Father's Day.  I love and respect this guy more than I could ever describe in words.  


  Father's Day was the 15th which also marked the SIX month mark from when I had my seizure and was diagnosed with the brain tumor.  Hard to believe that six months ago our lives were forever changed.  In six months we went from going about our everyday life to learning I had a brain tumor, undergoing brain surgery, 6 weeks of daily radiation, weekly blood draws, countless doctor appointments and now chemo.  Not to mention a lot of stuff with Owen.  I remember when I was first diagnosed I was ready to take on the world, blogged every night, had so much to say.  Then the reality of treatment hits you.  It kind of consumes your life.  I was getting treatment, taking care of the kids, going to doctor appointments and just trying to make it through the day.  I kind of slowed down for a bit.  I am excited to say that I am finally getting back to my old self. Feeling more energetic.  Ready to inspire and make a difference.  I actually just spoke with Froedtert today.  I had brought up my idea for Random Acts of Kindness in my blogs a few months back.  Ideas of things we could do right at the Cancer Center to make a difference in peoples lives.  Froedtert has had some meetings to come up with a game plan and I will be meeting with them in July to discuss how we can put these ideas into ACTION!  I am really looking forward to working with a team to make a difference for patients at the Cancer Center, give support to those who need it, bring positivity, help those who are having a bad day.  I have said this before but there are so many people that are battling over there and SO many things we can do, even little things to help them along their journey!  Can't wait to get started.

And lastly.... ONE good thing about having a serious health issue.  When you ask your husband to meet you so he can snap some photos of you and the kids, he doesn't ask questions or complains...he comes and takes the photos.  Here are a few photos of my and my loves.  :)


Thank you so much for your love and support.

Night!





 

Wednesday, June 11, 2014

MRI - Tumor is STABLE!

I want to thank everyone who wished me luck and prayed for me today as I went in for my second MRI to monitor my brain tumor.  I was surprisingly not too nervous.  Probably because this morning I was busy with the kids so I didn't even have much time to think about it.  Owen had his last day with the therapists that have been working with him for the last two years.  I cried dropping him off in the morning and cried even harder picking him up and hugging them all goodbye.  I am stopping over at the school on Friday to drop off their end of the year gifts but I just can't even explain how important they have been in both Owen's life and MINE.  Thankfully, Jen his amazing occupational therapist that has been with him for the last semester will be with him next year at his new school but Cathy, Emily and Pat who have been with him two straight years had their very last day with him today.  Now I am crying again.....  These three loved Owen like he was there own, pushed him to achieve his goals, got him back on track after seizure set backs, were there for him when he struggled to adjust after I got sick, were there for ME when I needed support.  They are the very reason Owen is going to thrive in kindergarten next year.  I hope they know how amazing they are and how thankful Jamie and I are that they came into our lives.

So after tearful hugs, I dropped the boys off at home and Jamie and I drove over to Froedtert.  Talk about a yucky rainy day.  I started with a blood draw and then had my MRI.  I was so nervous for the MRI because my last experience was not a good one, a total fluke with what happened but non the less I was really nervous about the contrast being put through my IV.  Thankfully today's MRI went really smoothly.  Karl over in the Pavillion radiation department was SO nice.  He got my head nice and snug, gave me a warm blanket, was so sweet to talk to and hand injected the contrast.  I was in and out in like 40 minutes tops.  Then Jamie and I made our way ALL the way back to the Cancer Center.  That place is like a maze, I am TERRIBLE with geography but somehow I can find my way through a hospital building like a pro.  :)

We had a short wait to see my doctor who immediately told us that the scans all looked great!  Tumor looks exactly the same as it did two months ago.  That's pretty much the best we can ask for, no new growth.  My blood work looked ok, my platelets dropped a bit but nothing alarming so onto month THREE of chemo!  Usually after my doctor appointment we just walk right down the hall to the pharmacy to grab the medication so I can start it Monday BUT my amazing (that was VERY sarcastic) insurance company decided that "for my convience" I now need to get it from a pharmacy that will mail it to me.  So now instead of meeting with my doctor and walking down the hall to get it NOW my doctor has to fax in the prescription, we have to wait 2-7 days for approval, then we need to arrange a time for them to deliver it to my house and I have to be physically present to accept delivery.  Now doesn't that sound more "convenient"?  So now instead of taking my pills Monday through Friday I will have to start them on Wednesday or Thursday when I finally get them.  I will have to take them over the weekend too which kind of sucks because you can't have any calories after 6pm which is kind of lame on a weekend.  BUT what can you do?  I could go on and on about the stupid insurance but I won't because I am just happy that my scans all looked good!

We have been having a great time lately with the boys too.  We had a few days of real "summer like" weather.  Now we are back to cold and rain.  This past weekend the church right by our house had a big festival.  It might be Owen's favorite weekend of the whole summer.  We get to walk to the festival and he rode a ton of rides.  On Saturday we had a big group over, the kids all played in our yard, we ate dinner here and then walked to the fair.  The kids had a blast at the fair and then we walked home and all the kids ran around the yard with flashlights and glow sticks and we started a movie and popcorn party at 9pm.  Just so fun to see the kids all together. We are so fortunate to have such a great group of friends.


My best friend from IL Liz even came up with her husband and their two cuties.  We became friends while running track in college, we don't see each other nearly enough but every time we get together but when we do actually see each it's just like old times.  


So again, I want to thank EVERYONE for all the love and support.  Sometimes I still feel like I am stuck in a Lifetime movie and can't believe how our life has changed.  Sometimes I feel like time is going so slow and other times I feel like it's flying by.  I can't believe that I am already on my third month of chemo.  I will be happy to be done with chemo and want it to go by quickly but I also want time to go by slowly so I can enjoy as much time with my boys as possible.  I am really looking forward to this summer, they are both at such a fun age and will keep me busy all day long but I wouldn't have it any other way.

As always here are some photos.

LOOK... I am getting hair... on the left side at least.  The right side is still pretty bald, I am REALLY hoping it grows back on the right side!  There are two pretty big scars though so it may not be too pretty.  Time will tell.  











Well that's all for tonight. I am EXHAUSTED.  Not sure what it is but days with doctors appointments just zap you.  Hoping to get some rest tonight. 

Thanks for the love!  Night!














Sunday, June 1, 2014

How I am REALLY doing.

I am back, haven't posted in nearly a month, I have been kind of quiet because things have been going pretty good around here AND because I just haven't been sure of how open I wanted to be about things anymore.  Things have changed so much since December.  When I was first diagnosed, I was so ready to take this on, had a big ambitions about sharing my story.. changing the world and then once you start treatment, radiation and now chemo it kind of takes over your life.   Doctors appointments, blood draws, medication to take daily, not feeling yourself.  I think I did pretty well through radiation and now the thought of chemo for a full year, maybe longer is tiring.  Add on top of that, about two months ago I was robbed at gunpoint in front of my kids (the incident that I talked about a few months back) I just wasn't sure how much I wanted to share.  I kind of just wanted to live in my house in a bubble with Jamie and the boys.  I think anybody that went through everything we have been through would probably feel the same.  

I kind of dreaded the first few times going out and seeing people.  Going to birthday parties knowing that people would be seeing me for the first time.  The awkwardness of wondering if they would be trying to see if they could tell I was wearing a wig, if they would talk about my health or just act like nothing was different.  When people did ask about my health I would always and still always just give the same generic response "I am hanging in there, tired but definitely hanging in there".  If you were lucky and I was in a good mood and not about to loose it crying I may have talked with you about more specifics of radiation or chemo but usually I feel I am two words away from a breakdown so I just go to my fool proof "hanging in there".  

The truth is I am "hanging in there" in fact I am doing better than that.  The hardest part is that I feel I always am trying to stay positive, there are just so many things everyday that lead me to thoughts I don't want to think.  I am constantly trying to keep my mind in a good spot.  For the most part I do really good, usually we are so busy with boys you hardly have time to think of anything else but little things just hit me right in the heart.  Mother's Day was hard, wondering how many Mother's Days I will have.  Seeing people post on Facebook photos of their grandmas, people posting about missing their moms that have passed away, seeing generations of mom's together.  Recently in Wisconsin there were two different car accidents in which a mom and dad were killed leaving behind their young kids.  Seeing people post about how they feel for the kids because they themselves lost their mom or dad when they were young and how they have no memories of them and how it was hard growing up with only one parent.  Seeing people post about anniversary's of their parents passing, people who lost their mom when they were in their early 20s and seeing how hard that was on them and how much that has affected them.  Then thinking to myself, is it better for your kids if you die while they are young so they just can move on and maybe not have memories of you or is it better for your kids if you die when they are in their 20s so they have you longer but your death might be so much harder on them?  And what about Jamie, what would be easier for him?  Ugh.....I just hate this.  I know the obvious answer is to keep doing what I am doing and keep kicking this tumor's ass and be around forever and that is my plan.  That is my mind set but I just have to keep focusing on that non stop to keep my mind there. 

I have numerous friends who are pregnant now, who are reading this right now I am sure! :)  I am SO happy for them.  We were done with two kids so it's not like I was really wanting more but I can't help but think they are still on the upswing of life and I am kind of on the downhill.  Not just my pregnant friends but most people around me.  Job promotions, new houses, etc it just seems like everyone around me is still enjoying life and that it's getting better and better and for me it's just about maintaining, if that makes sense?  This better not make anyone that I am close with feel weird about telling me exciting things going on in their lives because I am absolutely 100% happy for everyone around me, I am not jealous in any way but I just feel different.  Like I have peaked, I am over the hill.  

I hope this isn't coming off as that I am depressed because that is NOT the case.  I am just trying to open up about what it's really like in my head right now.  If you saw me you would know that I am doing really good, it's just that i have a lot going on in my head all the time.  Many of these thoughts above I have shared with no one, including Jamie because I don't think this way often.  It's just impossible NOT to think that way sometimes. 

BUT for the other 90% of my day I am doing great.  I feel really good.  The first month of chemo KICKED MY BUTT but this past month was not bad at all.  Hoping the rest of the months are as easy as this past month.  The boys are so cute right now.  They are actually playing with each other more and more every day.  They still fight a ton but to see them when they get along just melts my heart.  I feel like in the last 2 weeks I have really gotten back into the groove.  My patience seems to be back, I am back to keeping up with the boys, keeping them busy all day, having the energy to do fun spontaneous things with them.  I feel so much more like myself lately and that is amazing.  Owen has been extra adorable lately.  When he talks to me he is always smiling so big he can barely talk.  I can barely stand to listen to him because I just want to snuggle him!  Thankfully Owen is my snuggler.  He will still wake up from a nap and run into the family room and run right into my arms and sit on my lap and snuggle me.  Even though he's almost six and his legs are so long, he still fits so perfectly in my lap.  Jacob is so goofy these days and is talking a ton!  Anytime Owen isn't in the same room as him he will constantly say "where Owen".  I love hearing his little footsteps running around the house and when he comes into a room I am in he instantly says "hi mom" in the cutest little laugh.  I am so blessed to have those two little munchkins in my life. 

Jamie and I are doing good too.  Yesterday we went on a date to the Harbor House and had such a nice time.  Jamie, my hubby of VERY few words took time at the end of dinner to tell me how proud he is of me and how I am handling everything.  I cried and then we couldn't leave until I composed myself because we knew people that were sitting in the bar.  We planned to go mini golfing after dinner but I was too tired, maybe next time.  :)  We have our ten year anniversary in September and are trying to plan a small get away in August just the two of us.  We haven't been anywhere in SO long and I am pretty sure we deserve a few days away to relax. 

So that's that.  I blog that really shows how I am feeling.  I got a message from friend the other day.  Her husband had seen me and told her that I looked "really good and healthy".  That just made my day because that is how I feel.  So my battle continues on.  This week coming week I just need to go in for a blood draw and then on June 12th I go back in for my second MRI to see what the tumor looks like.  I am already kind of nervous for this, actually mostly nervous for the dye to go through my IV during the MRI since we had such issues with it last time but nervous obviously for the MRI results.  I feel confident though that it will be good news that everything still looks stable. 

So I will just keep chugging along, trying to keep up with my two loves!  Speaking of the boys (well including Jamie I have THREE loves) here are  few photos.







  
Thanks again to everyone for all the love and support!