Back from the dead, round II !

Hey guys! I just wanted to let everyone know that I am at home now, and am doing well. I get really tired quick and easy but I guess that’s expected and my body is just healing. I wanted to give everyone a perspective on things now, from MY point of view. on January 8th, I remember being at work. I was working on a network map and drawing schematics all day. If you don’t know what this is, it’s basically tiny lines running parallel to one another. While I felt fine at work, at the end of the day I kinda started feeling funny and dizzy. I sent Amanda an IM and told her to call Dr. Shertz and let him know what’s up. He was on vacation, so she called Dr. Harron. He didn’t return her call quick so she told me just to go to her work and she’d meet me there. I remember driving most of the way. About half way on the drive home, I don’t remember much. I vaguely remember getting to the ER at Franklin Memorial, and I have NO clue how I got there. The next thing I know, I woke up (it was the next day) and I was strapped to a bed, with tubes down my throat and IVs in my arms and was in ICU. Now keep in mind, I don’t get IVs since I have a port. Amanda had told me that I stopped breathing and LifeGuard 10 had flown me to Roanoke. She told me what happened. I don’t remember much of that day but I remember her telling me what happened. I have NO recollection of the night I had the seizure and was flown. In fact, I don’t remember ANYTHING from my hospital stay. Amanda told me about the people who came to see me. If you came to see me in the hospital, I am sorry but I do not remember it, and I am sure I seemed flakey while you were there. I don’t remember crashing while I was in the hospital either, but Amanda and Tiffany said I lost vision and feeling in my body. I just remember waking up and everyone telling me my second brain surgery was finished. It’s amazing what your body can shut out for you to not remember. That being said, I feel much better.

During my seizure, I dislocated my right shoulder and tore the rotator cuff in it. I go to Roanoke Orthopedic next week to chat with the surgeon there about it. He’s told me that he would have to take my shoulder apart and rebuild it. Let me tell you, I am excited aout that! It hurts really bad at times though, especially of a morning when I wake up.

I did go see Dr. Harron on Wednesday and he took the 38 staples out of my head. That didn’t hurt like I thought it would. After we left there, we went to Dr. Buck to get my head cast fitted for my radiation. They hope to start that next week. They’re not targeting any tumor to kill, but IU wants to do radiation in the tumor bed since it came back so aggressive. I’m all for it.

Friday, I went to see Dr. Shertz. He said right now, we need to focus on radiation so nothing comes back in my noggin. Again I’m in total agreement with that. He also cancelled the head part of my CT scan on Tuesday, since it’s so close to surgery. I do get a full body CT on Tuesday though to see what the rest of my tumors are doing. Hopefully still shrinking. He did do blood work to see where my tumor markers were, and also to get my Dilantin level. If my dilantin level gets low enough, it puts me at a very high risk for more seizures. I am on medicine for that now though. The bad part of it, is that I cannot drive until June. That sucks!

So in a nutshell, all of my doctors appointments this week went good. Next week will be a busy week since I will probably start radiation, on top of everything else I have going on. On a lighter note, for those who DID come see me in the hospital, thank you. For those who called, texted, left comments on here, etc, thank you. It means a lot to me that so many of you care about me. For everyone at my work who made food for Amanda and I, it was GREAT and THANK YOU!! I don’t think I let Amanda get much of it, since I am on steroids and stay hungry. Thank you though, it’s awesome. We will keep you posted with when I start radiation, and what the doctor says next week.

Also on a side note, I’ve updated the “medical team” part of this website. I am also constantly adding stuff, so make sure you check back often as I am trying to build this site up with not only my journey through this cancer battle, but also so others can use it as a resource to help them get through cancer and battle their own journey.

Thanks for reading my long post, and keeping up with me through my blog. You all ROCK! Thanks for all of the prayers and concerns as well. I am going to leave you with an excellent video that Amanda showed me. I really like it. Please watch it because it took me forever to get it to post in the blog. I hope everyone has a good weekened!


1 MD appointment down, 2 more to go

Josh had an appointment with Dr. Buck the radiation oncologist yesterday.  I had classes so our friend Tommy took him.  Once he gets his staples out (tomorrow) he will get a CT of the brain.  They will make a mesh cover for his head.  Radiation will begin about 10 days after the CT, they will need time to get the mesh thing made.  The mesh thing will go over his head and will be screwed to the table.  He will not be able to move his head so they deliver the radiation to the correct part of the brain.  They are not doing whole brain radiation He will be getting 20 treatments, they will be low dose treatments so hopefully he won’t be get all the nasty radiation side effects.  The radiation appointments will be quick, about 30 minutes per appointment.

We have any appointment tomorrow with Dr. Harron to get his staples removed…all 38 of them!  Yeah..he had me count them and then wanting me to type it here so he could read this when he forgets.  His short term memory is still lacking.

We have an appointment with Dr. Schertz on Friday to discuss additional treatments and figure out what IU wants to do next if anything.

Back to work!

HAHA!  I tricked yall–you thought I was going to say Josh was going back to work already but really its me!  I came back to work this weekend after being off for 2 weeks to be with Josh.  Its nice for life to be somewhat normal again but I miss being with him. 

Wednesday Josh had major cabin fever and after bugging me to take him to walmart all day we compromised.  I brought him to the hospital to see the nurses and Dr. Abel–the doctor who treated him in the ER.   Since he remembers nothing from that visit he wanted to meet her.  Then I got him a pizza–these steroids are making him eat like a cow!

A while back we got a gift certificate for dinner for 2 at the Peaks of Otter restaurant that expired on January 31 so Thursday night we went there for dinner.  I was nervous about how Josh would do on the long car ride there and back but he did fine.  We saw about 20 deer on the way there and about 15 deer in their parking lot.  They were so tame we got within about 8 feet of them and they never moved!  The food was good, they were dead.  They said the winter months are the slowest for them.  While we were there the pond was froze over except for 1 spot which never freezes because there is a natural spring there.  There was a small otter that played in that spot the whole time we were there.  We watched him in the water and the deer in the grass throughout our whole meal.

Physical therapy came out friday to assess Josh.  Insurance did approve for him to have 10 pt sessions and 5 ot sessions.  I’m not sure he will need that much pt.  He is doing really well since coming home.  Occupational therapy is supposed to come Monday afternoon.  He has 3 doctors appointments next week, Dr. Buck on Monday, Dr. Harron on Wednesday, and Dr. Schertz on Friday. 

Since he is still not to be left home alone he is with my parents this weekend.  My poor parents are watching both of my boys!  I’m sure the boys are having fun together.

Home again

Dr. Harron came in to see Josh last night at around 8pm and asked if he wanted to go home tomorrow and Josh replied “I want to go home now!”  Dr Harron didn’t really care as long as I was okay with it.  If you remember before he originally wanted to do the surgery this tuesday and I said I wasn’t taking Josh home because I didn’t feel comfortable with it which was why he tried to move the surgery up!  So we got discharged around 9:30ish last night.  As soon as we got home Josh took a shower which made him feel a lot better.  Today was good, Tiffany was with him today while I was at school.  I like it when she is with him, since he doesn’t remember the seizure or anything since then he has LOTS of questions about that night to the present.  He asks all kinds of questions that the normal person wouldn’t think of asking so at least she can help me out with him. Therapy will start coming to the house to help him on Friday.  I’m excited to see how that will go as he has already made great progress with very little help from them!

Next Monday he has an appointment with the radiation oncologist so hopefully we can get the radiation started shortly after that!  He is nervous about the effects it will have on his body as well as how he will get there everyday since he can’t drive.

I’ve gotten behind on my thank you notes and I apologize that some of them are coming late.  Thank you to everyone who has called, sent cards, and prayers for us, it is all appreciated very much. 

Better days

Josh has had a good couple days.  He hasn’t had any pain medications since yesterday around 6pm.  Yesterday in therapy he walked all the way to the nurses station which was about 200 feet, he was getting a little shaky towards the end.  We have made the decision to go home rather than a rehab or nursing facility for a few different reasons.  Physical and occupational therapists will be coming to our house starting Friday.  He will not be able to be left alone so we will have to depend on others to help us out while I am in school during the week.  We have several appointments next week, Dr Buck, Dr. Schertz, and maybe Dr. Harron along with therapies.  Hopefully Josh will be discharged tonight or tomorrow at the latest.  He is very anxious to be home.

New Room….again

We are in a new room, if you want to come visit you must call/text either cell phone and we will let you know what room Josh is in.  Today Josh walked with assistance to the bathroom.  Tomorrow therapy should be back to help him mobilate more.  Dr. Harron said today that as long as Josh is able to walk Josh should be able to go home tuesday or wednesday.  At this point we are not sure whether we will be going to our house or my parents house.  Once Josh is home therapy will be coming to our house to do his therapy.  He will not be able to be left at home alone.  We are not sure at this point if we will need a wheelchair or a ramp on our deck at home, hopefully we will know more tomorrow.

Another day

Today Josh has been awake more than the past few days.  Kobie came to see us today and Josh really enjoyed that!  Hopefully tomorrow we will be moving to another room.  We had some issues with unwanted visitors so now if you want to know what room Josh is in you have to call/text either his cell phone or mine; you will not be able to call the hospital and ask them.  I highly doubt our unwanted visitor will read the blog but I can’t take chances as they upset Josh.

The rehab team came to talk to us about rehab today.  We have to decide what we want to do by Monday.  On Monday 2 more nurses on the rehab team and discuss what we have decided.  Basically we have 3 options:

Option 1: Inpatient rehab for 2-3 weeks

Option 2: Outpatient rehab in which Josh will go to day rehab everyday for a few weeks

Option 3: Go home with therapy to come to our house everyday

I worry about how I will be able to care for Josh by myself right now, he would be totally dependent on me. Then we would have to figure out how to get him up the front steps into the house and how to transport him and the wheelchair to radiation everyday.  We are not sure option 1 or 2 will even work for us as he will start radiation in about 10-12 days.  The therapy team we talked to today said their goal at the rehab was rehab not radiation.  Our goal is radiation then rehab.  We still have to weigh our options but I’m sure nothing will be set in stone until we talk to them on Monday.

Therapy, new room

Therapy started yesterday.  They came once in the morning and done minor things like hand/arm/leg movement, that went well.  In the afternoon they came back and got him on the side of the bed and then stood him up.  That didn’t go as well as I’d hoped but he has already came a long way so far so I am confident.  He was also moved to a different room last night, room 1099.  He slept really well last night and is still sleeping his morning.  Today therapy isn’t here but I plan on getting him up and into a chair so I can change the sheets on his bed and give him a bath.  Once again if you call and I don’t answer don’t get upset it means that we are busy or asleep.  I will try to call you back but right now its hard enough returning phone calls from his family along with meeting his daily needs.

Day by day…

..we will make it though this!  I got to the hospital this morning around 9am and Josh was sleeping.  When he finally woke up he said he had an itch on his nose so I tried to scratch it.  He got frustrated that I couldn’t hit the spot and he can’t move his right arm because its in a sling so he moved his left hand to his nose and scratched it!  He is moving his fingers, hand, arm (at times), a few toes, and leg (at times).  He is doing a lot better.  He slept most of the day which I expected.  Tomorrow he should be more awake but he is starting physical therapy.  We are limiting his visits/visitors on his therapy days especially in the beginning until we see how they go.  At this point his therapy is the most important thing and we need to focus all of his energy on therapy.  He has a long way to go before he is able to come home so we need to focus on therapy.  Josh gets tired really easily still but he is making great progress.

Emergency Surgery

I woke up at almost 7 this morning and was getting ready to go relieve our night shift nurse for Josh (Thank you SO much Tiff) and I got a call about 8:15 saying that they were taking Josh down for emergency surgery and that I would probably not be able to see him before surgery.  So my dad rushed me up there.  The doctor decided to do emergency surgery because of the increasing pain in Joshs head, his nausea and vomiting, his paralysis on the left side, and his loss of vision.  His vision had gotten really bad.  The pre-op nurse failed to Dr. Harron before she was done with Josh so I did get to see him and spend a few minutes with him before surgery.  His left side was affected so badly he could not feel me touching him on his left arm, leg, foot, face, neck, or ear.  When I kissed him as they were rolling him down to the or he didn’t even feel it and make the nurse call me back again to kiss him because he didn’t realize I kissed him before.  He couldn’t see me standing beside of him either.  They finally got him down to the OR around 10am and got out around 1:!5.  They think they got his shoulder fixed while in surgery but there are no incisions so I need to talk to Dr. Miller more about that.  The surgery took about the same time as last time but this time they didn’t have to drill his skull again they just had to “pop those rivets out”.  Josh is in really good spirits and is in some pain but the pain is nowhere near as bad as before surgery thank god.  I’d seen about enough suffering as I could handle!  His left side is still not functioning.  At times he can move 1 toe and maybe 2 or 3 fingers.  He can feel if you touch him, he says it feels funny. SO he doesn’t really realize that he is being touched by a person vs the sheets.  The recovery time will be longer and harder than the recovery time for the last brain surgery because of the paralysis he experienced before the surgery this time.  The surgeon said he got all of the tumor and he cleaned the area around it out more thoroughly this time so hopefully it wont grow back.  He had to scrap Joshs skull to remove tumor matter from it.  Part of the tumor was growing into the dura of the brain so he had to remove some of that and he replaced it with dura-bond.  This tumor was the same size if not bigger than the last one.  This tumor was solid whereas the last one was sort of liquidey.

Josh is in the neuro-trauma icu for now and will likely be there for a few days.  Visitors are limited there.  He will likely want to sleep of the time for the next few days so visitors will be limited.  Today has been a crazy day, if you called and I didn’t answer or call back I’m sorry.  Thanks for all the prayers.  I will update again tomorrow.