Tuesday, May 30, 2017

May 30th. 40 days post op

I don't have a ton of updates.
The big celebration last week was David turning 21.
The other celebration of sorts was gramps memorial.  He was 93 and he was also a veteran so it was fitting to have his memorial on memorial day.  It was a great gathering of friends and family.
As for medial updates go, I am still getting around.  I have had some balance issues lately but I think that is from me still learning to walk with out crutches.  That is making improvements daily.  One of my biggest issues is nerve pain at night.  It is pretty severe.  I simply don't know how to resolve that.  I walk, elevate it, put it down, take meds....  Nothing helps.  It is super frustrating.  I have to think that if I have pain, I have feeling. Right?  That is how I put it in my head.
Today is my second day of driving to work.  I do enjoy going to the office and seeing my co workers.  It is good to give them a hard time.

That's it for now.
Be thankful for all that you have.

Wednesday, May 24, 2017

May 24th

PT is still going well.  Not a whole lot to share there.

Today is approx. day 6 without using crutches.  That is pretty huge.  The PT person wants me to get a trekking pole to help me walk more upright and to help put weight on my left leg.  I do OK if I concentrate on doing that.  It is a memory thing.  She said the longer I walk badly, the more my body will adjust to that and think that is normal.  That is a good reminder to walk more normal.

I had an apt with my Neuro.  The final verdict is it is Astrocytoma Grade 2.  I understood about 1/4 of what he was saying.  I almost told him to stop and speak English.  He referred me to an oncologys/radiologist.  He comes very highly recommended.  Unfortunately, he had a bad bike accident and is in the hospital himself.  That, in an odd way, is a good thing for me.  It will give him plenty of time to read up and come up with a plan for me.  Astrocytoma is a rare tumor so he can read up on it.  We asked my Dr several questions regarding radiation and he kept saying, "that is an excellent question for Dr Meyers".  It could be no radiation, 1 session or several.  We don't know yet.  My apt with him is late June.  I am in no rush anyway.

A friend of mine told me to take blue green algae.  It is to help with low energy.  It tastes exactly as you would think it does.  Gross!  I got the powder form that you put in water.  I cant wait to run out and get tablets next time!

Have an excellent holiday weekend.

Monday, May 22, 2017

May 22nd. 32 days post op

Today is a pretty big day.  I have an appointment with the neurosurgeon later today.  I am hopeful he will know what the heck the tumor is by today.  I am also curious if he will refer me to an oncologist for radiation.  That sounds like zero fun.

Things are still improving.  I am now, not using crutches except for tball practice and when I go to bed.  Tball, I stand too long for not using crutches.  I don't really want to fall down with all of the kids there.  When I go to bed, I remove my leg brace and there is no way I can go crutch less (is that a word?) as I go from the bathroom where I change clothes to the bed.

I am getting more and more toe movement.  It is miniscule but I will take any at all.
I am trying to exercise as much as possible.  My step count is really improving.
The last 3 days, the nerve pain has been pretty intense.  Like real bad.  I don't know if it is from exercising a lot more or what but it sucks.  It is always at night time when it is the worst.  I can deal with it.  It just sucks but it could be so much worse.
I will try to update after the Dr apt.

Thursday, May 18, 2017

May 18th. 28 days post op

I just re read most of my blog that I created while in the hospital.  I tried to fix the spelling errors and the parts that did not make sense.  I remind you, I was HEAVILY medicated and that is the excuse I am sticking with.

I am a little bit surprised at the positive spin I put on it. It was easily the most screwed up thing in my life.  EVER!  I hope no one ever can relate to what I went through.

I am still chatting with the guy I found on Facebook that had the same type of tumor that I had.  It is nice to talk with someone that is farther along in the healing process than I am.  It really helps to hear his story and how things are progressing.

The kids have been super about being careful around my leg. They are the best kids.

I had my first PT and OT appointment last week. In OT, they just put me in a driving simulator to see if I could drive.  It was NOT as cool as I was hoping.  They bought it in 1999 and updated it in 2007.  Any driving video game out there today is more realistic than what they tested me on.
During the practice/warm up part of the simulation, I did run over a cat.  :-)  In the actual test though, I scored a perfect 10 out of 10 and I have the blessing to drive.  I did tell her that I had already driven a few times.  That was off the record of course.  :-)

I am still working on recovery.  Things are going well.  Just slow but I wont complain.  Just 20 some days ago, I couldn't do anything on my own.  Now I can.  Just a heck of a lot slower.

Do me a favor if you read this.  Slow down.  Take things in.  Even the little things like flowers and birds.  Smell the flowers.  Hug your oved one longer than normal.  Kiss your kids more than normal.  But a coffee for a stranger at the coffee shop.  Call (don't text) someone that you have not talked to lately.  Really appreciate everything possible.  This thing we call life can be tricky at times, but it can kick ass also.  Take in the kick ass parts!

Love to all.

Tuesday, May 16, 2017

May 16th

All is going well.  I am having small movements on the left side.  It is very encouraging.

My neurosurgeon called me last Friday.  He said the tumor is now in CA at University of CA, San Francisco.  They are testing it there and trying to figure out what it is.  They are thinking it is astrocytoma but not sure yet.  They are doing some type of DNA testing on it.  I have another appointment with the neurosurgeon next Monday and he is hoping to find out for sure, what it is.
He did drop a little bit of a bomb on me.  He said he might refer me to an oncologist for radiation treatment.  He had said before surgery, that nerves do not like radiation or chemotherapy so I was a little bit on the shocked side when he said that might be an option.  From what I have read online, typically, they do radiation if, the don't get it all (not the case with me) or if it grades out at a 3 or 4.  So, I am hoping mine gets a 1 or 2.

I have found a person on Facebook that had a very similar tumor except his was huge!  As in a foot long!  Mine was 2 CM long.  We have chatted some.  He had radiation because they could not get all of his out with surgery alone.  He was brutally honest and said radiation is pretty brutal.  It is going to take a hard sell to talk me into doing that.  I am crossing my fingers that wont be needed and I wont need to make that decision.

Everything else is going good.  I even drove into work today and found a handicap spot at our building!  I hope to work about 3/4 of a day today. 

Thanks for all of the support.

Monday, May 8, 2017

May 8th 18 days post op.

I am back in the saddle and could not be happier about it.

It has been humbling to have so many people reach out to me and either say they are thinking of me or have been reading this.
In all honesty, it was for me to vent, cry, document....  I do think I did all of those things as well.
I was release Friday afternoon.  Lori and I had some running around to do with all of the things to get.  Crutches and prescriptions.  My normal pharmacy did not have all of my meds.  In fact, they still don't.  I could nearly open a pharmacy of my own with all of the meds I have.
I  had a huge goal of making it to a tball game.  I think the adrenaline took over and I was even on the field.  I was exhausted after 3 innings of standing there but I would not change it for the world!
Later that night, we had a surprise birthday party for Loris Dad, Gary.  I even had a beer.  It was a cheap, bud light, but it was delicious!

I think the blog will be changing direction in a way.  I think I am going to start documenting the recovery.  IE, slight movement in left toes, less pain in leg......  In other words, it is going to be even less exciting to read.  :-)

I cant say enough how grateful I am.  I do have the best family, friends and co workers ever. 

I have started working again.  That gives me a feeling of normalcy.  I have craved normalcy for a long time now.  I was not sure at what capacity I would get it.
I would say I am 75% now.
I use crutches to get around and I think I am doing good at it.  Stairs make me a little nervous but I am getting there.
I will start PT next week and in the interim, I will do PT at home with what I have learned.
I do not know when I will drive into work again.  I am not rushing it but, it is a goal of mine.  I need to figure out where to park first. 

Thank you again to everyone.  Like I said, it was truly humbling.
Love to all.

Thursday, May 4, 2017

May 4th.

14 days
3 rooms
Countless DR's, Nurses, anesthesiologist, RN's, PT, OT, advocates, 4 ultrasound techs, meal people and people behind the scenes that made this process as smooth as possible.
And I can say, "I am going home tomorrow".

A huge thank you to everyone that stepped up not only for me but Lori and the kids. She went through all of this with me except I had the benefit of being waited on hand and foot. Not only did she take care of absolutely everything at home, work, kids, she also fielded questions about me. Thanks Lori. You are my rock.

Tomorrow morning, I will get one last ultrasound checking for blood clots. I am going to miss the ultrasound people. They were fun.

After that, I get to take a shower. Alone! First time in 15 days. Independance!
Somewhere in there is breakfast. I will have one last PT when Lori is here so they can give her some tips to keep me in line. That or show how easy it is to knock me down. :-)
I hope to have my own personal AFO (ankle foot othosis) device. That means fancy leg brace. That thing is amazing to me. It looks so simple. I had to learn to trust it. Yesterday, pt had me take it off and walk  I did not want to. I have learned to trust it. I did as requested. It was ugly to put it mildly. They wanted me to do that so they could do a write up for justification for insurance since they are crazy expensive. After using it, they are worth the cost. Thanks goodness I have prettt good insurance  and most of not all will be covered for it.
I will also have crutches. No walker or wheelchair needed. If you would have asked me a week ago if if I was going to need a walker, I probably would have said yes.
I am thrilled this part of my journey is wrapping up.
Thanks again for everything.

Love to all. Enjoy everything that is possible.  Especially the little things.

May 3rd

i just realized something. I have poured my heart and soul out on this blog. Then, I get good news and dry up. That's pretty crappy of me. If you have read along this far, I certainly owe you the good updates also.

I can't sleep so this is the perfect time.
I am still targeted to go home on Friday, cinco de mayo. And yes, we are having Mexican that night. A nice cervaza sounds great but no promises.

As for nerve pain, it is much better. It is medium on the left lower part of my leg. The meds are keeping it manageable. I also still have numbness in my rear end which is just obnoxious to constantly have a numb butt!
Nerve damage/loss is pretty much in the same locations as the pain. I can now slightly wiggle my left toes. I can very slightly push down on the ball of my left foot. I can not pump my ankle like a "gas pedal" move. I also can't move my left ankle back and forth like wiper blades.   My left leg and hip is very weak.

Now for the good stuff.
I can get around!  My left leg is getting stronger. The nerves are starting to respond. Everyday there is some type of improvement. It really is amazing.
The hospital has been amazing. At first I had to ring a nurse to go to the bathroom. Then I was allowed to go from bed to wheelchair to bathroom alone. Then I was allowed to use crutches in my room. Today, I was told I could use crutches, without help of anyone, and I can cruise the entire wing. Freedom!  Unfortunately, before I had been given that opportunity, the physical therapist wore me completely out. Maybe tomorrow.
During PT today, I even climbed an entire flight of stairs and back. I really had no idea how that would go. It went surprisingly well. Funny how that was easy but moving sideways is hard and unstable. After the stairs, we worked on using one crutch. Because how else would I carry my coffee?  I have priorities after all. And I have yet to find cup holders for crutches.

After I get discharged, I will start out patient therapy. One thing they have there is a driving simulator. The Dr gets data from that and will give the blessing to drive. I am excited to do that. I didn't think of losing that before surgery.

We still don't know what the tumor really was yet. It has been tested 3 times so far. My neurosurgeon said it would go to the Mayo Clinic, but I don't know the details of that.

I wanted to share the great news and some good details for once.
I have thought of removing most if not all of this blog as it is so personal and embarrassing. If it helps anyone in anyway (and I hope no one gets as scared as I was) then, this will be worth it.

I am hopeful that I will have some profound words of wisdom soon but for now; look big picture, enjoy everything you have. Love and be loved. Work hard and play a lot harder. Stop, look around at some of the truly excellent things there are for us and the beauty of them. Take it all in.

Love to all. I do appreciate the love sent my way.
Have an excellent day!

Wednesday, May 3, 2017

May 2nd. Day 12

I have huge news. Target release date is Friday, May 5th.
Everything is progressing nicely.
My biggest dream right now, is to get home and attend a tball game on Saturday. That sounds like perfection to me.
I am optimistic nothing will stop the plan. Assuming Mother Nature holds off on rain Saturday.

Love to all.

Monday, May 1, 2017

May 1. Post op 11 days

11 days.  Wow. I really never thought I would still be in the hospital.
With that said, things have gone great today. Zero setbacks and nothing but positives.
The DR is still tweaking the meds for a couple of things.
The therapy is going well. It is shocking how long the most basic task now takes. Like making coffee.   I am going to rearrange a few things when I get home. Not many though.
I dont have a target exit date yet. I believe my "team" of DR's and nurses and therapy folks meet to talk and help decide what is best for me. At that time, I might get a target date. I need to get the most out of this and not be a 3rd child for Lori. She is already doing enough. She has been an incredible rock through all of this. Thank god she is in my life.
Stand by for a target date.

Love to all.