Visitors

I am up for visitors. But I need to limit it. At the same time I'm not going to be very entertaining. In fact, I'm likely to fall asleep while you're here. Please call or text before coming I have full3 hours of therapy a day. My schedule tomorrow is 9 am10 am 2 pm &230 pm. I need thec down time in between sessions to rest. So eveningsvare the bestbtimes to visit again text me before coming. I don't know where to tell anyone to park I am in the John Burton pavilion terrace rehab unit room 39

Pathology

I got my pathology report back. Not good news I expected it to be just like last time a glioblastoma. Unfortunately, I was told this was a blend between glioblastoma and pnet. Pnet rumors are typically seen in pediatrics. This is something that puts me in a category all my own. That is never what you want to hear. Seemsbthe plan isvto do reradiation. Reradiation ion conjunction with. Another chemotherapy drug is the best opportunity to beat this. Not sure. What that will do for my release from rehab. B/c chemotherapy and radiation make me weaker so I'll likely regress. In therapy.

People keep asking about visiting. It's really hard to say when a good time is. I am having to learn how to walk again. As you can imagine this is exhausting and frustrating. 24 here I feel like I have to entertain. I don't want people to come just watch me sleep. That's what I end up doing for most of the day. because I don't really get to sleep at night. I cannot find resti in this hospital at all. I'm grumpy grouchy and I spend most of my time being upset. Not sure that makes for a good visit

Visits

Visitors are really tough right now. My days are full with therapy sessions and appointments so it is tough to nail down good times for visits. Therapy sessions are a trying experience because as anyone who has done them realizes it takes a tremendous physical and mental effort i need to make the most of them so visits during therapy sessions wont work to get then done. Maybe headed to rehab Facility tomorrow which would be a good thing because they have facilities to teach the skills I need to be able to go home. It won't be fun or easy Think of it like an intervention type experience they'll put me in the bad spots i could end up in by myself. And then teach me how to safely cope. My goal is to come out more confident and capable than I went in.

Huge day today! Walked to the end of the hall using a walker and with a pt/it standing behind me. But considering my leg was literally in responsive/paralyzed yesterday this was huge! Lots of work still to do. But at least I was given a reminder that it was possible today. Every day will not have this much rapid progress and I know I'll have frustrating days where're I make no progress. But today felt good. Once again it is not my job to decide what is possible before I try it. Still not sure when I'll be up for visitors. Partly because I expect to spend a ton of time in therapy.it is hard and exhausting. Tough. To say when I'll beawske and in my room

Please understand I love to have visitors. But I am still trying to read my t weap my head aroundthidwhole thing. My left leg does not work I need help do things that get to the bathroom. This is a tough pill to swallow. I know you just want to see me but it's hard for me to have people see me like this thy his may be hard to understand. Really had a lot of questions about why tegu we did surgery. Just had those answered tonight
I'm also going to ask that visitors talk with my sister before coming. I'll be in and out quite a bit this week for therapy

Moving on up

John was moved out of the neuro ICU this morning. He had a busy day in the NIC all day. He was moved again this evening to the neuro critical care unit. John's looking much better tonight, although he told me that he looks better than he feels. He's not quite ready for visitors yet. If you'd like to check in or visit in the next few days please text me 401-359-7727 to ask.

Madeit through surgery mostly intact. My left leg does
not work at all right now. I'm told it will come back. Very scary right now though. Because. No one knows any thing with 1000% certainty. Just gotta hope for the brst. Really exhausted and in pain right now. More posts to come soom

Out of Surgery

Dr. Q reports that John made it through surgery very well. The tumor caused a lot of swelling. They cleaned out as much as possible. Pathology will not come back for several weeks. We don't know much else because he is still in ICU and we haven't been able to see him yet. We'll do our best to keep the updates coming.

Please keep the prayers and good vibes coming John's way.

"don't count the days, make the days count"

Today was a reminder that it is not my job to jump to conclusions about what I'll be able to do from now on. Yesterday,my left hand and leg did not work. I had to have my father pull me in and out of bed and hold me up while I used the bathroom. Today I can get myself out of bed, granted it takes tremendous effort. I'm not sure why these changes occurred or if they're permanent. Point is I'll take them. This is just one day. Who knows what tomorrow will bring? I don't but I'm looking forward to it because it is a new day.
To those who're going to visit please just check in prior to coming. I don't want to have too many people all at once. You don't have to bring anything. But please no sweets, my blood sugar has been a bit high and there is a connection between high blood sugar and the occurrence of siezuress. Nuts, trail mix, fruits, veggies, all ok, no coffee drinks no sodas, no candy no cakes
I'm working on getting a conference room to watch the pats take the title so some people can come watch. It won't be ideal hd television and it will be in a hospital with a few unapologetic pats fans. Let me know if you might be interested. Space will be limited no pressure either way. I'll also have to head to bed right after because surgery is scheduledvfor 730 am Monday.

Surgery delayed

Just talked To dr. Q weaned we postponed surgery until 7 am Monday morning. I will be in the hospital until then. I'm not thrilled about that part. As I posted yesterday I had 3 seizures 2 which were terrifying my leg and arm were barely working yesterday. There has been significant improvement since yesterday. Dr. Q felt lthat my brain was likely in turmoil after those two events. He felt the meds I am now on in the hospital and the improvement signified that my brain was in a bit of turmoil and we would likely get a better result if we let things settle down. He is also just back from Peru and was trying to shuffle my operation today into a full OR schedule. I'd rather have the first op on Monday morning with a fresh dr Q then him scarmbling to get me a chance in a crowded OR after a week of travel.
Watching the pats take the title in the hospital is not ideal. But nothing is these days is ideal so I'll deal. I'm much more open to visitors now since my condition has improved. Just let me know before u decide to stop by so I can make sure I don't have too many at once. Treats except caffiene are welcome as well.I'm also not very entertaining

Never made surgery literally scariest day ever

I'm sitting in the hospital and I don't mind saying that today was the scariest day of all of this. I woke up this morning very confused about how to feel. For a long time I had centered a lot of hate and grief on the device I was forced to carry around. Then I started to get used to it. Then I realized I had made it my crutch. Any anxiety or problem was a product of the device. Not the tumor. Almost a bit of institutionalization. My goal had not become beating cancer but getting done with the device.
Before surgery I had a partial seizure and for the first time was not able to take my meds bc I was shaking too badly. My sister found me and helped me and the seizure subsided. 20 minutes later I got into the car to head to the hospital and had a severe seizure. I could barely breathe my hand and arm and leg were paralyzed. My jaw felt wired shut. Literally had a moment where I thought I might die. The best way to describe the fear combined with the helplessness to stop what is happening literally a nightmare that you can't get out of. we called an ambulance but were determined to make it to Hopkins for surgery. We knew an ambulance would take me to the closest medical center so I told them I would not go with them unless they took me to Hopkins. Well while trying to act tough I had another severe seizure and agreed to go wherever with them. Once again I my face arm and legs were frozen and I'm gasping for air. You keep thinking stay calm stop shaking catch your breath. Nothing works. They took me to Anne arundel medical center. Surgery is rescheduled for tomorrow at 2 hopefully we get it in without any surprises.
I'm now at Hopkins bayview. Tough for me to receive visitors because I find my situation a little embarrassing. Please understand In October I'm running 13 miles. Now I need someone to hold me up while I urinate and I have to physically move my left leg with my hand because it is lame

Things didn't go to plan to start the day. I had 2 serious seizures this morning and had to be transported by ambulance to aamc transferreto bay view surgery seems to be planned for tomorrow

updates

Unless I talked to you about it beforehand please do not text or call my phone looking for updates. I love my family but the waiting room is going to be a zoo with all of them there and My sister will be right in the middle of it. She also has a baby to take care of( and i don't mean me)
She will be updating the blog. She has more people to update than she can possibly deal with
with. She will update the blog as things happen. If there is no update then there is nothing has happened yet. No news can be the best news sometimes as well.
I'm not sure when I'll be up for visitors. I'm fairly certain I'll likely be in the hospital over the weekend. I know the surgery is supposed to relieve some of the symptoms. last time I was able to do so much before they anticipated. I am not in
shape that I was last time and I was not having as bad of a problem as i am this time. So it will probably take longer to get the
okay to go home. I'm not sure when I'll be up fir visitors either but probably not before saturday afternoon/evening. but check b4 coming