Getting ready for another surgery...

Hello again!

Wow it has been a long time since I have posted an update! As of tomorrow I will be 15 weeks post op...what a recovery it has been! So many things have happened during the past couple of months, I really should have been blogging more often.

Let me start my saying, I continue to improve with each passing week. I feel like I really turned a corner a couple of weeks ago, both mentally and physically.

I was really struggling during July/beginning of August in particular. I think the weight of what I have experienced really finally hit me. Many mornings I would wake up hoping it was all a bad dream followed by the disbelief that I was still dizzy, still extremely tired and still deaf in my left ear. I felt intense anxiety and depression for how to figure out my new life. I mourned the loss of who I used to be. I have come to better terms with what my new normal means...and as my sister puts it...who's normal anyway :)! So I have dusted myself off and continue to work on the new version of me, Kris 2.0: New Mom and Brain Tumor Survivor

I am doing new things all of the time. Things that seem everyday to all of you, but I am happy to celebrate each one of my milestones...some of which include walking up stairs with Parker, driving a few blocks, walking a few blocks in the dark (when they mess with your balance nerve it affects your night vision), having stamina to not need a 2 hour nap everyday, reading a book...and so on.

Being deaf in one ear has its challenges. Sometimes I wish I could wear a sign to let people know that I am not ignoring them, I just have no idea that they are talking to me. I have to constantly make sure that people are walking on my good side. It can be so frustrating at times. I am so, so thankful to have good hearing in my right ear! This leads me to my next piece of news.

In a couple of weeks I will be having another surgery. I know what you are thinking...what kind of sadistic person signs up to have their head drilled into again?!? Well, there is technology out there that may help give me 'hearing' back on my left side. It is called BAHA (bone anchored hearing aid). As it turns out our bodies are capable of conducting sound through bone. The BAHA works by having a metal rod implanted into your skull. Then a small box, the sound processor, attaches to this metal prong. The device works to pick up sound on my bad ear and sends it via my skull to the cochlea of my good ear. So I am not actually hearing anything on the left or bad side per se. Most of my inner ear and hearing nerve were destroyed in order to get my tumor out. This is why I can't use a regular hearing aid. They just amplify sound. I don't have anything to process that information. So my left ear is really just for show now :) So when you see me next, you will know what the tiny little box snapped to my head, behind my ear is. I can even plug my ipod into it directly and don't need earphones...straight sound to the brain. This device will give me some of my surround sound back that most of you folks reading this enjoy!

The procedure will take under an hour and they do it while I am awake. This makes me a little squeamish, but it will not even come close to 11 hours of actual brain surgery. Nonetheless, wish me luck. I had tears in my eyes when I tried on a demo of the device. To hear someone talking on my bad side again was miraculous! Hurray for advancements in technology! Once they drill/screw the metal rod into my head, I wait for 3 months to allow the bone to heal around the peg. Once it heals I will be ready to wear my new hearing aid processor. Supposedly, it won't give me directionality back, but at least my blind spot isn't so big. Directionality is a handy tool that allows you to tell where sound is coming from...with one ear you have no clue. So when you call my name from a distance I literally have to look all around me to see where it is coming from. It is a pain in the rear end when you forget where you set your cell phone and don't know where its ringing from let me tell ya....

The longest thing to heal has been my eyes. My tumor did a number on them. They are much improved! However, they have a long way to go yet. I am hopeful that between my therapy and time they will work themselves out. Basically when I look to the left or up and to the left my eye can bounce around. This has made it tough to do much driving. It can also take me a minute to get focused in new or different surroundings (so that I can get oriented). I just keep exercising them and try to stay patient. Many of my tumor friends tell me that they continue to improve even up to 3 years post-op!

My physical rehabilitation is going well! My physical therapists were impressed with the amount of balance I had 4 weeks post op and my steady improvement. They said that the fact I was a gym rat prior to getting sick really worked in my favor. I have gone from learning how to turn my head to look both ways before crossing a street to catching balls thrown at me from different directions! I have to walk and do balance exercises everyday to stay sharp. My right brain has taken over that job for my left and needs the constant stimulation. My amazing husband creating a balance gym in our basement for me, complete with a balance beam for me to use in between PT sessions.

In summary, I am doing a lot better, but still healing. I still feel so lucky to have the outcome I did. I have talked to other people with my size of tumor that have full facial paralysis, weights in their eyes so they can blink or double vision. I am lucky to be alive and smiling! When it comes down to it, life is hard sometimes and everyone has their struggles. When it comes to balancing it out, I have way more to be thankful for than to complain about.

Parker has been instrumental in keeping me moving forward...He has given me the strength I need to get out of bed in the morning and fight through the rough days. I know that he deserves all of the love and attention I can give him. I could have never imagined the amount of joy he has brought to my life. He is such a healthy and happy little boy!

Enough of my rambling. I will try to post again soon and not so far between! I know you are all dying to see some new scar pictures!

Thank you all again for the words of encouragement throughout these past few months! It means the world to me to read and hear from everyone!

Quick update

Hi Everyone!

It has been about 3.5 weeks since my surgery now...and life recovering from a craniotomy and tending to a newborn are busy...and that is an understatement! I haven't posted much as the baby keeps me busy and any extended time on the computer really fatigues my brain and causes excess eye strain. I am lucky to have such great help with the baby so that I can rest a little more than most mom's with a new baby!

I just wanted to let you all know that slowly but surely I am making progress! As I reflect on the symptoms that have resolved, I am reminded at how far I have come! I am blessed for the outcome thus far and continue to pray that all will resolve/ improve.

Also, local ABC news media did a piece on our story (I posted this already on facebook a week or so ago) and I think that there may be some other media coverage coming....I will post if this is the case....http://www.wisn.com/video/23956845/index.html


I am just so thrilled to be alive with a healthy baby..I wanted to list out some of the things that have improved from prior to surgery and I am thankful for...and that I will never take for granted again....

I can now walk without help...in the last weeks before surgery I had to hold on to my husband or mom

I can look up at a menu at a place like starbucks with my eyes (and not move my head)

I can wash my hair without getting water/soap in my left eye because it didn't close tightly

The left half of my face doesn't feel like its asleep with a 10lb weight

I can feel my tongue
I can drink out of a glass without dribbling fluid out of my mouth

I can put eye makeup on again because I can focus my eyes to do so (and can now feel my eyelid)

My left arm has better coordination when I type! I was starting to hit the caps lock key all of the time...ugh!

My smile is symmetrical again

My left eye is the same size as my right eye 95% of the time...it was bulging prior to surgery.

I have full facial function post surgery!!!

Did I mention my adorable baby that is happy and healthy despite his early arrival (and spending the first month of his life living in a hotel/hospital)?! He really is my miracle baby! I am biased of course, but I think is the most adorable little guy. Holding him sets my heart at ease. He is growing so fast! I love every minute of being a mom!

My husband has never left my side. He has been so supportive and selfless. He is the most amazing dad. I am thankful every second of the day that he asked me to marry him. He helps me find strength I never knew I had.

My mom has been taking care of Parker and I for over a month and a half. She has done more for us than you can imagine...feedings, diapers, laundry a shoulder to cry on and motivation to move forward...and on and on...

I am thankful for all of you: my friends, family and neighbors. WOW is all I can say about the things you have done for us! They say God only gives us what we can handle. I think that he gave me each and every one of you to help me through, because this was more than I could handle alone!


I am still waiting for my eyes to track fully together, but I can tell that they are slowly improving with each week! I have to practice looking side to side. I continue to try to adjust to hearing only out of my right ear. Noisy places and large crowds are intimidating and I can only take them in small doses right now. I still have a decent amount of that 'wonky' head feeling, but I know I need to be patient as it has only been 3.5 weeks! Same for the fatigue as I tire quickly. All of these things will just take time and patience.

It is great to be on the other side...the weight of the world has been lifted from my shoulders, and I am so thankful and blessed to be typing this message. I have hope and I believe that all will continue to get better. I am not ready to drive yet. I have another week of restrictions on lifting, sneezing etc and then I get to start vestibular (balance) and physical therapy. I can't wait to be working out again! My incisions are all healing nicely, but I think the longest healing process will be the emotional one.


Thanks again all of you for your support. Every comment posted helped me get through this. I can't tell you how much hearing from everyone helped. It made me feel like I was never alone on this journey. I will be forever grateful.

I will post more when I can, but my brain is now maxed and I need to sleep! Fingers crossed baby Parker will start sleeping through the night in a few weeks!!!!

Parole: Approved

Well, Kris' parole came due today and she was approved for release. We busted her out of St. Vincent's Hospital and now we are required to live in a halfway house for a week. This is the same dormitory we've been living in for about 2 weeks now, Kris is just moving back into our room with us now. She will have some follow up appointments next week and they just want to make sure now complications arise and she continues to progress before we fly home. Parker has a checkup too. We can't wait to be back in Wisconsin (not many people say that when coming from CA) and see all of our friends, family and pets.

More Video

Kris reuniting with Parker again and actually getting to hold him. I told you it would be emotional - I couldn't be any happier right now.



Ok check that, I could be a little happier if I had my dogs and was back at home, but you catch my drift.

Day 5 Videos

Mixing it up with a little video of Kris' progress.

Day 4 Update

Steady improvement yesterday as well. Kris' eyes continue to come around and she's able to focus a bit better. It's not all the way there, but its coming. She also has improved on her mobility. We're walking several times a day, and each time is faster and with more stability. I'm really proud with her perseverance and her determination to get back to something that resembles normal. I'm also wowed by her perspective on things as well. She could be really angry with life and the world for what she's been through, but instead she chooses to see the good in everything. She more talks about how much she appreciates and the loved ones in her life and is thankful for the outpouring of support from them, which includes all of you reading this.

Cue the tears now...on one of her walks yesterday she walked into the waiting room where Kaye was sitting with Parker. She got to see and touch her baby boy for the first time. It was an emotional meeting, but it brought that smile to my face that I talked about earlier. I'm just so happy that after all this, her hungry, poopy, cuddly reward (that's Parker, in case you missed that) is hers to enjoy very soon.

Kris improves her street cred

I am really suprised and pleased at the scar. They shaved very little hair and the incision is a lot neater smaller than I was expecting.



Sorry if you're squeemish.

Days 2 & 3

Post Op Day 2: Yada, yada, yada. Fastforward.....just a blah day. Sorry I didn't post, but it was just too busy and it was a bit of a downer day.

Post Op Day 3: I was a little freaked when her Dr. said that he hadn't really seen how her eyes were reacting before, but he reassured me that everything was perfect after surgery and the MRI was good so he was not too concerned. She just needs time. Sure enough, mid-morning rolled around and there was vast improvement. PT got her up to walk around and she was a little shaky the first time. She did much better in the afternoon and walked quite a bit with less assistance. Third time we did a full lap around the floor.



Her eyes are opening more, and while still not fully coordinated, there's big improvement there too. We sat and had a real conversation for a bit, which was so uplifting for both of us. Good to see smiles and laughs.

I expect we'll see continued improvement from here. It's a bit too emotional right now to reunite with Parker (actually probably the subsequent departures that would kill her), and she's not supposed to endure emotional stress right now (Doesn't this whole thing count as that?) because I guess it puts pressure on the brain. I can't wait until she's ready for that meeting though. That'll put the world's biggest smile on my face.

Recovery: Day 1

I got in to see Kris several times today. She is sleeping most of the time and very groggy from the pain medication when she is not. She's bothered by head pain (does this surprise anyone?) the most and she's soar from being strapped down in an awkward position for 10 hours during the surgery. The ICU staff says its not uncommon for her to have this soreness and pain, and things should get better as the hours march on. Long surgery + lots of brain displacement = difficult recovery.

She is really bothered by opening her eyes, so she doesn't do it too much right now. She says it makes her head hurt so she has to be pushed by us and the staff to try every so often to get used to it. The doctors have done full exams on her and gotten good response out of her eyes when they do, so they don't think there is any lasting issues there it might just take a little time to adjust. She also had an MRI today to check for fluid buildup and such and it came back clean which was good.

I did notice that as the day progress our conversations went from one word answers to more reciprocal interactions. I believe that with another night of rest the progress will continue.

As Dr. Marvin once said....Baby steps.

Post-Op Summary

Well I finally got to a computer to type up a real report. The public network blocked the social networking sites, so I had to update via my phone which is a pain.

In any event, things went very well yesterday. Kris went under anesthesia around 11am local time and she was out around 9pm. A little longer under the knife than we were quoted, but it's not uncommon for a tumor of her size to take that long. She was stable the whole time, didn't lose much blood, and the doctors were able to do what they needed to do. They got 99% of the tumor out, with the last little microscopic bit stuck to her facial nerve. They don't push the issue too much, because the facial nerve is a very important thing to keep in tact, as it controls the whole side of your face including the eyelid (think about not being able to blink or close your eye - Ben Stein doesn't have enough drops to cure those dry eyes). Thankfully, the facial nerve remained in tact and was responsive to stimulation throughout the surgery. She's now in ICU being monitored for 24 - 36 hours to make sure there are no compications. None expected, but they can happen from time to time.

Now she just needs a little time to recuperate from a long surgery, and it can take a few days for her body to react to not having a big mass in her head. The doctor said that the tumor was "plunging into her brain", which was really upsetting her cerebellum and causing the symptoms she was experiencing. She may experience some issues things with her face, balance, coordination, eye function, etc. but its likely those things are temporary. Outside chance of permanent effects from the tumor, but its too early to tell on that. The important thing is that she is healthy, has no tumor and will be ready to start recovering very soon.

For those of you who were previously unaware, Kris is now deaf in her left ear as a result of the surgical approach. She had a hearing test just before surgery and it was almost gone anyway already, so its not a surprise and was on the bottom of the totem pole of things to preserve. The doctors were going to try to get a bone anchored hearing aid implanted during the procedure, but with the length of the surgery they did not feel it a good idea to tack on additional time under anesthesia. No big loss, it was a mere convenience to do these at the same time. We'll get it done locally sometime down the road through an outpatient procedure.

I'm off to see her in ICU now, so till next time....

good stuff

they got the tumor out and are closing up. went very well im told. will post more details later when i get to a computer

the beat goes on

doc just checked in. still going, probably a few hours to go still yet. that would make 10 hrs under. they say shes still doing well though. got tom petty on the brain...."the waiting is the hardest part"

ongoing

got an updat.e about an hour or so ago. surgery is going well, not much blood loss so far. they have everything opened up and are working on taking out the tumor next. it takes awhile just to get setup and then crack open her noggin. hopefully it comes out easy from here. will post as i know more

Underway

surgery started .a little under 2 hrs ago. kris was in remarkably good spirits this am, and is looking forward to feeling bettter. she wanted me to put a reward out for anyone that tracks down an authentic Brett Michaels bandana for her to wear. she was really funny this am , it was nice to see a glimpse of her in an unburdened state like old times...yea meds!

till later

Big Day Tomorrow

Well, I'm back blogging so that means that the big day draws near. Very near in fact, things begin around 10am pst tomorrow (Friday, 6/4) and will last in the neighborhood of 7-8 hours (+/- a few). Emotions are free flowing at this point. Everything from anxiety and fear to relief and anticipation are running rampant. We are confident that we chose the right doctors to do this and do it very well, so we know things will be okay but it still brain surgery which is scary any way you look at it. The wait has been painstaking though (we've known since the beginning of March) and we're ready to be on the recovery side now.

Since the last time I wrote we've moved over to the dormitory attached to St. Vincent's Hospital. It's not much in the way of fancy, but it gets the job done for a very reasonable price. The proximity to Dr. Appt's and the hospital is second to none, and we've been fortunate to have met a lot of nice and amazing people while we've been here. Also, big bonus my Mom came to town on Tuesday so we've got reinforcements to help out while Kris is laid up.

Parker is doing very well. He had his 2 week check up and he's weighing in up over his birth weight now, which is excellent, and no issues what so ever with anything health related either. He eats, sleeps and poops like a champ so we're extremely happy and fortunate parents.

I'll be updating as much as possible tomorrow during and after the surgery, as I know there are many people that have expressed interest in hearing how things are going. Till then....

More Thanks

A huge thanks to Grandma Kaye for her time out here in LA with us. Her help has and will continue to be invaluable, and this whole thing would be infinitely harder without her. She put the rest of her life on hold for us, which is truly heroic.



Also, enormous thanks to Grandpa Jim for keeping an eye on our two pups as well. This task is not an easy one, especially with Esme who's a real handful. We're grateful our little ones have Jim's Cheesedogger Emporium to hang out in, so they didn't have to be boarded for over a month.

Thanks in advance to Grandma Donna as well, as I am positive she will be a big help with Parker when we're consumed with Kris' recovery from surgery.

Love,
Mike & Kris

Phase 1 Complete

Today was a glorious day as we all walked out of the hospital as a family. OK, so hospital policy requires patients to be wheeled out and Parker is still a few weeks away from walking, but you get the idea.





It feels great to be back in the comforts of our home away from home, much more spacious fo sho. I know Kris is thoroughly enjoying the nap she's getting in a real bed right now, without some eastern European nurse barging in to take vital signs or whatever the inconvenience of the hour happens to be. Don't get me wrong the people at Cedars-Sinai were outstanding, I'm just saying that hospitals just aren't all that awesome for extended stays is all. But I digress....

We're all really happy now, and we can rest a little for a few weeks while we prepare for phase 2: Tumor extraction. We're anxious to get Kris on the better side of this tumor, but the surgery is still a very scary endeavor.

It'll be pretty quiet here for a few weeks so you probably won't here much from me until the date of June 4th draws near. Perhaps in the meantime I'll try and convince Kris to put some of her thoughts down on paper for a different perspective on all this.

Special shout out to the help on the ground hear in LA: my great aunt Myrtle who lent us her car (for our entire stay!), my cousins Nancy & Mary who delivered the car and lent their car seat/stroller system, Amanda Carpenter who cooked and gave us rides (looking forward to you visiting more if you're reading this), Kris' co-worker Billy who lent us some baby gear, the ANA folks who gave Kris and Kaye rides before I got here, the list goes on.... We couldn't feel any more comfortable away from home and it has a lot to do with these folks.

Thanks for listening and thanks again for the support.

Homeward Bound

Parker's Pediatrician stopped in today and let us know that he's doing very well, and has a good chance of going home (meaning the hotel) with us when Kris is discharged tomorrow. Truly fantastic news. Right now we're in no rush, we're just enjoying having him around and going through the routine with him. Eat, poop, sleep. Eat, poop, sleep. Where do I sign up?

He's a super good baby so far, and is not fussy in the slightest. Eats well, sleeps well...just like Dad. I know this will likely change, but that's okay too. Health = happiness for us.

Everyone likes to play the game of "who does he look like?" I personally am not a fan of this game because I can't relate baby features to big people features very well, but let's see what all of you think. Here's a point of reference as well...my baby picture. I don't have a copy of Kris' scanned in so you'll have to use your imagination.

Graduation Day!

Our little dude continues to impress, and he is moving out of the NICU and down to the observation nursery right across the hall from us. No cords or monitors for him anymore, he's free wheeling now. They still will keep an eye on him in the nursery because of his age, but I think we're pretty much responsible for all his care, which is fine by us. The goal is for him to go home with us on Saturday, so we'll here's to hoping we hit that. Right now we've got visions of a Billy Madison type party for him at each stage of his progression (Parker, passed the 3rd Grade, ohh what a glorious daaayyy!).



Very exciting news indeed!

Kris is doing well too, and obviously her spirits have been lifted with him moving even closer to us. Her mobility continues to improve from the C-Section and she's walking around more now. She still has symptoms from the tumor, but they have eased some as compared to pre-delivery. Her neuro team has checked her out here in the hospital and they see no reason for any concern or haste in moving up her surgery. As of now, we're still on for June 4th, but we'll let you know if that changes of course.

Thanks for all the support and well wishes, they're greatly appreciated!

Action Packed Day

Sorry for the lack of updates, but it has been a day full of activities. We had an early morning visit with Parker and then met with his doctors. They were pleased with his progress and took off the breathing supplement and said he could start feeding normally! Here's a pic without the tubes getting in the way of his handsome mug.



The big task of the day has been getting him to feed. A little awkward for both parties at first, but they'll get the hang of it. I've gotten to change his diaper and dress him in some of his own gear, which was actually pretty awesome. I'm sure this thrill will pass, but right now it's all good and I'm loving it.

Today was a little more challenging because they didn't transfer Kris out of ICU until late afternoon, and ICU is not in the same building as the NICU. We had to make several trips back and forth with a nurse wheeling her over, which adds to the rigors of the feeding schedule. We're now in the maternity ward, which is only a floor below the NICU and I can wheel Kris up to see him whenever we want. MUCH better. We're told if he feeds well and his breathing continues to improve, he may be able to come down to our room to hang with us instead of the NICU. We can't wait to have him around full time!

Hopefully I'll have more time tomorrow to post some more pictures.

Another huge breakthrough!

Parker said his first words today. It was a little garbled, but I'm pretty sure he said "Go Blackhawks".

Finally They Meet!

Kris was allowed up to see Parker for the first time, and it was a special reunion!



We're so pleased with his progress already. They extubated him around 4pm pst and he's breathing on his own now. They say he'll be ready for feeding tomorrow. Obviously we were able to hold him, and I was able to take part in his bath, hair combing and diaper change (ewww!) - all awesome experiences. Truly as good of outcome as we could have hoped for so far (knock on wood).

Peace out probably for tonight. I'm pooped and so is Kris.

Update

Kris is doing very well. They put her under general anesthesia for the procedure and then stuck her in ICU mainly because when people here brain tumor they freak. At little extra precaution never hurt anyone and I is for the best, but it has kept Kris apart from Parker thus far which is a big bummer for her. We're working on getting her IV out and sent up to seem him real soon.

As for Parker, he's doing very well. As you can see he's a big boy for his age, much more filled out than I expected! He initially let out some good cries, but then had trouble sustaining good breathing after that, so they intubated him. They did the thorough workup on him and the only thing out of order is RDS (respiratory distress syndrome), which basically means his lungs are a bit immature. They gave him some meds for that and his readings are steadily improving! They're hoping to extubate (take the tube out) him later today, which will be super exciting so we can start feeding and holding him.

Thanks for all the support via email, text, posts etc. Can't wait to bring him home soon.

Welcome Parker Kristian Siwek!

Our little guy is here. 6lbs 14oz, 19" (who won the pool?)



His lungs are a little under developed so he is on a little bit of help from a respirator, but they're hoping he can be weened off soon. They'll be alittle NICU observation after he's off the respirator.

Mom is doing well and recovering now. More later!

It's go time!

Well, we've made the decision to go ahead with the C-Section tomorrow, May 18th @ 9:30 pst. At this point our OB is comfortable where we are at with the pregnancy especially since we're past 34 weeks and have gotten steroid shots to help lung development. The chances at a healthy outcome are very, very good at this point and it is time to have a healthy delivery so we can shift the attention onto Kris getting well. She's put her physical and mental well being on the line for 3 months while her symptoms consistently increased, which is on top of the usual challenges of pregnancy to boot. The surgeons have expressed an urgency to get on with her surgery as soon as possible, so the time is now!

She'll always be my hero for what she has endured for our son. Her time to get well is coming soon!

Can't wait to introduce our little man to you very soon.

Mike

Testing

Hello All, Not to much going on here right now...it's a waiting game until we meet with the surgeon again on Monday. So with us having some down time I thought I'd test out our new camcorder and see if I can post a quick video to this blog successfully. Here goes.

Till next time...
Mike

The dates are ever changing....

Okay, so here is the latest. My mom and I made it safely to LA! The weather here is awesome and people have been great. I have met all of my doctors...they are wonderful...I am in the right place.

My neurosurgeon wants to see me again on Monday to assess how I am doing. The brainstem compression has made me quite symptomatic. Between the tumor and my ever expanding belly it is difficult for me to get around without holding on to my mom.

If all is the same on Monday, I am delivering the baby on the evening of 5/20. My neurosurgeon doesn't want anything going on with my spine right now, so unfortunately I will be having my c-section under general anesthesia (ie knocked out vs epidural or spinal block). I am sad to miss out on those first moments of my son's life and meeting my him for the first time with Michael, but I don't have a choice and I trust my docs to do what is best for me.

Then as soon as I am cleared and moving around post c-section they are going to knock me out again and tackle this tumor.

So my dates are ever changing. Right now tumor day is 6/4 and that date will only move up.

Mike will likely be updating this blog from here on out...I may post here and there as the spirit moves me :)

Thank you everyone for your ongoing thoughts, prayers and support!

I am now taking guesses on baby weight. I am predicting 6 lbs 10 oz (though it feels like he must be at least 10 lbs)...Just hoping his lungs are good and that he doesn't require any NICU time! He has dropped I am told, so I am hoping that is a good sign!

Love to you all, Kris

Thought you all might be interested in an upcoming article in Harper's Bazaar on Tara Subkoff, a designer and actress who recently had surgery to remove her acoustic neuroma at House Institute in LA (where I am having surgery:


http://www.harpersbazaar.com/magazine/feature-articles/tara-subkoff-brain-tumor-0510

Also for any of you who remember the group TLC from the 90's (Waterfalls), here is video clip of T-Boz talking about her acoustic neuroma and Dr Rick Friedman who is also my doc...

http://www.comcast.net/video/t-boz-s-brain-tumor-battle/1313634743/Comcast/1313496770/

The Latest...

The latest is that we have decided to have the baby in California. We didn't want to risk him having to stay in the NICU back home while we were across the country AND didn't want him to fly when he is so little. I start steroid injections next week to ready the baby's lungs which reduces my anxiety about having him early. So I am headed out in 11 days to consult with my new OB and then have the baby a few days later. My neuro team will be on hand to consult and then we will do my tumor surgery approx 2 weeks after delivery. Craziness! This will all be over soon! We will be blogging from LA soon...

Baby date and surgery date have been moved up...

Hi All,

More info to come, but surgeon wants to move up my surgery date (I had an MRI on Monday). So the baby will be here in 3 weeks (instead of 6)...please pray that he will be a healthy preemie! So nervous, but so anxious for this to be over. Looks like my surgery will happen the beginning of June....doc's office will be calling later today with my new surgery date. Let the good times roll!

a few maternity pics...

Mike and I had the pleasure of working with Allie Gadziemski from Proud to Introduce for a few maternity photos prior to her photographing our newborn! I just wanted to attach a few of them. The one time in life that you don't have to worry about looking chubby in pictures :)

Oh baby!!!

Baby is still doing well! He is just shy of 4 pounds now...and less than 8 weeks! Hoping the time flies because it sure is getting harder to walk!

Eviction notice to tumor...

My tumor is getting kicked to the curb on July 14th! Surgery is scheduled! It sounds twisted, but I want the day to get here. I want it out of my head. I am ready to be on the 'other side' of all of this! I want to be 'normal' again, whatever that means for me I don't know...but I don't want to be known as 'the pregnant lady with the brain tumor' anymore! I need you all to pray hard that this tumor shrinks a little on its own prior to surgery....far fetched, but not impossible! Shrink, shrink, shrink!

Some of you have asked who my surgeons are (I have a team of 2...one does the dissection/exposure near the ear and the other near the brain stem)... I am attaching links to their bios. I feel really good about my decision. My life is now in their hands. I have done the research and now it's time to let go and believe I will have the best possible outcome!

http://www.houseearclinic.com/friedmanRA.htm
http://www.houseearclinic.com/schwartzMS.htm

The little things...

So, forewarning, this post is just me rambling...no health 'updates', please click on if you don't want to waste the next 30 seconds :)

It was a wonderful Easter weekend filled with family and sunshine. I really believe that sunny days can change your whole mood...spring is such a hopeful time. My spirit is in a good place at this moment all things considered. I just have this overwhelming feeling of trying to take note of the little things...take it all in and not let it pass by....things like my spring tulips blooming, the smell of rain on warm pavement, the warm sun on my face. I must say that I see people a little differently now. I have always enjoyed striking up a conversation with a stranger...but I find now that I am paying more attention and trying even harder to get a smile or a laugh. You all know how much I love making people laugh (even if its for courtesy and I am not that funny).

The only small sadness I felt this weekend, was likely just as much from pregnancy and wondering if your body will ever be normal again! As it is exceedingly difficult for me to walk around at this point, roll over, sit down (OUCH!), I found myself looking at spring high heels and feeling like they would never belong in my closet again. Ladies know what I am talking about. The change of seasons and fashion is exciting. All I could think about was whether or not I would be able to have enough balance to wear high heels again :) Such a small detail not really worth worrying about...but since I am faced with not knowing how much/little I will be affected until after surgery I find myself wondering the little ways my life will change. I am confident that I will heal beautifully and really at the end of the day wearing certain things means squat as long as the baby and I are healthy. But it really just causes me to reflect on all of the little things we all take for granted. I don't want to take these things for granted anymore. I don't want to sound 'preachy', but I do encourage all of you to think about one little thing today that makes your life great or even normal...and celebrate it!

Today I find myself excited for the Brewer's opening day. Opening day is a big deal in Milwaukee. I haven't been, but I hear it is a lot of fun. I have seen so many people decked out in their fan gear today and I can't help but get excited for them, their 70 degree tailgate weather and racing sausages! Nothing is more summer than catching a baseball game at the ballpark. Hoping Mike and I can catch a night/weekend game soon whether it is the Brewers or White Sox!

Have a great week everybody!

We have a birthdate...for now at least!

Saw my regular OB today. All is still going well!

I scheduled my c-section...Baby Siwek is coming June 10th midmorning. It is kind of a weird feeling knowing I will wake up that day and head to the hospital to have the baby :) So many things in my life are out of my control right now that it is nice to have something set! This is pending that all stays stable for me...and I believe it will. It's amazing how little you worry about the idea of a c-section when brain surgery is on the horizon!

My neurosurgeon is now working on his end to get my surgery scheduled. We are looking at approx 3 weeks after baby comes. This will give me a little time to recover and spend with my son before I am out of commission for a little while.

We are planning to get to LA 3-4 days prior to surgery (2 of those days are for pre-op testing). I am thinking that we need some time to buy baby items I didn't want to lug on the plane both ways(bassinet, bath tub,etc). So many things for such a tiny human!

So the countdown is on! 70 days left before baby gets here. We are so excited!

My new t-shirt biz...

People react to me a lot of different ways...some good, some bad and some weird. Some people stare at me expecting to see signs of the tumor like I am growing horns :) One of the hardest things for me right now is learning to communicate in large groups and noisy places. Because my hearing is already compromised in my left ear it can be a little more difficult. I can't make out the words if you whisper into my left ear. I may be asking 'what' or 'excuse me' often. Please be patient with me.

Not that there is a market for brain tumor t-shirts, thank God, but many ideas have come to mind. So I will share them periodically. I have to keep humor in my life :)

1. 'I have a brain tumor, what's your excuse?!?"

2. 'Does this tumor make me look fat or is it the baby???'

3. 'Shit rolls downhill....apparently I live at the bottom of that hill'

4. 'Please direct all negative comments to my deaf ear'

So that is all for now...I know I will have more soon...

taking every piece of good news I can get!

So I got the results back from my gestational diabetes test today. I am good to go! For all of you out there not familiar, it is a routine test that all pregnant women have done as they enter their third trimester. Diabetes can develop during pregnancy and thus the need for the screening. It may seem like a small victory, but I want to put some more W's in my column!

Also, finally into the 3rd trimester! I see the doctor tomorrow and will be discussing c-section dates. My goal is to make it to 38 weeks (so around 6/9) Keep praying that this goober in my brain takes a breather from growing for just 10 more weeks!

Just getting started...

I really haven't ever been one for oversharing on the internet, but given the circumstances I thought it would be easiest to keep friends and family updated on my journey all at once. My close friends know that I have always been more of a private person and do not like to show weakness. I don't have a choice now about being vulnerable to the world because I am raw, I am hurting and I am terrified. I will need my friends and family more than I ever have in my entire life. I am forced to ask for help as I can't go it alone and who would want to!?!

Almost a month ago, I was diagnosed with a type of benign brain tumor called an acoustic neuroma (AN). Seriously, who finds out they have a brain tumor while they are pregnant!?! It is surreal knowing that I have this little life growing inside of me while this tumor is also growing trying to threaten my life.

Mine is one of the large ones. I guess I don't really do things halfway...even tumors. ANs are benign tumors and for this I am grateful. But benign tumor in the brain does not mean without consequence. It will require a long, technically demanding surgery that will leave me completely deaf in my left ear. Due to the tumor size, I am limited in the approaches that the surgeons can take. The approach we are going with gives me the best chance of preserving left sided facial function. (great info at www.anausa.org and www.houseearclinic.com) Most importantly, I have found a wonderful surgical team in LA. So shortly after the baby comes, we will make the pilgrimage to LA for 2 weeks as I have surgery and start to recover. Recovery is different for everyone, but my little guy will be extra incentive to heal quickly.

I am blessed to have the most amazing husband to hold my hand through this journey. God knew what he was doing when he chose Michael for my husband. I couldn't make it through this without him...I am a better person because of him. Some days I feel like we've crammed 40 years of marriage into 4. I often think back to our wedding day and wonder if someday we could be that couple again....you know free of worry and unimpeded dreams for our future. But I wouldn't change how strong we have grown as a couple. I love him more every day.

I also have such supportive parents. I know it can't be easy watching their child suffer. They raised me to be a strong and independant woman...but I will ALWAYS need my mom and dad. Mom is coming to LA with us to help take care of the baby and Dad will be watching our furry babies at home.

To my wonderful friends...thank you. Thank you for reaching out with emails, texts and phonecalls. I am so sorry that it has taken me awhile to respond. It is just so exhausting for me to retell my story and to go through emotional journey with each of you that mean so much to me. But please know it means the world to me to hear from you and hear words of encouragement. It keeps me going...truly. I am humbled by the outpouring of support from both likely and unexpected places. Its unfortunate of circumstances to have this kind of revelation, but I believe that it is God's way of reminding me that I am blessed despite this life challenge directly in my path.

To be quite honest, as many of you know, conceiving a child was extremely difficult for us. The tragedy of losing our little girl will haunt me forever. We were about to start IVF last fall, when I found out we were finally pregnant again. I took a pregnancy test just to be safe before starting the heavy hormones necessary for IVF. I felt like I was witnessing a miracle when that test turned positive. I do know that these experiences allow me to appreciate the miracle of life more than 99% of the population. My little man has no idea how much he is loved and wanted already! So when I start to go off into a dark place of self pity I try to remind myself of how I felt that day when I learned we were expecting...extremely lucky and blessed.

I am not going to lie, it was really hard to get out of bed for awhile. I was feeling immense sadness and fear. But I have now come to the realization that I own my attitude. I need to stay positive and embrace the present. Tomorrow isn't guaranteed for any of us. So my new motto is to live a life worth saving. Right now I need to focus on the health of my baby. He is my priority. I may get beat up a little, but I will do what it takes to make sure his life starts out on the right foot. Who would have ever thought I would be learning to take my first steps again just months before he does :)

I know I am getting long winded, but this blog will also be my own therapy for dealing with the flood of emotions I don't know what to do with. I will stop by as I have any updates, so check back if you so desire. It is easier for me to put it all out here at once...

So my love to all of you reading this...hang on tight! Here we go...Me vs. Brain Tumor....I win!