Cyberknife #1

Today I got whipped. I think it's combination of two, one is getting up early and the other is the anxiety of the treatment. AM glad I was able to sleep this p.m. even with the steroid. I did take 2 anxiety pills once I arrived at office. Was a bit nervous, didn't want to leave groggy. I had them stop the treatment once (as told, to raise my hand and they would stop) to adjust my neck on the hard surface. I then had 10 minutes to go. As I was finishing up, I felt the pill working. I need to see if they have something softer I could place where I lay my head.

Plus, the technician cut out my mask where my eyes go. Made it not so bad. Again, still unable to move as the fancy machine circled my head, aiming directly and precisely at my brain.

I don't know why, but I'm very tired. Told Tim to get Subway for dinner.

PS I saw for the first time in a long time a friend, another cancer survivor today.
I got to thank her first hand for the rosary beads blessed by the Pope. Thanks, Michelle W.

1st Cyberknife down, 2 to go

Will write more later, after I lay down. Am pooped from getting up so early, and of course the anxiety. I'm now on decadron, a steroid for immflamation. Side effect is unable to sleep. Wish me luck.

A busy week ahead

I can only take a day at a time or else I get anxious. Looking into this week is the unknown which I don't like. I should realize that by having God by myself is power by itself. I have to work on that.

I'm headed to church this a.m. Using only my cane today for support on uneven pavement. Lisa has invited me to sit with her, and Tim will be driving. They are aware of my treatments this week, so will have tons of prayers to be with me.

I haven't talked about Barry in a long time. Without his love and support, I would not be here. With his cancer and him dealing with that crap, I don't know how he handles the situation. Continues to work full time, plus hours. This week he worked 6 days. They have extended his chemo treatment to be next month maybe, a total of about 6 months in between treatments. He continues to have discomfort, never complains. He is my strength. He worries that by not having the chemo as often that the cancer knows that and is growing.

So please don't forget my husband in your prayers, and my son Tim. He continues to do well in his grades. I don't know how he can concentrate on his studies but he does. I think that's how he puts it to rest.

Comment from my dad..

This picture was taken the very first time u walked without Hospital Assistance at rehab at Greenville. Gee, dont we look great. lol
This is a very important week for you and EVERYONE WILL HAVE YOU IN THEIR PRAYERS AND THOUGHTS. SO NICE PATTI WILL BE AROUND AGAIN. SHE SURE IS A BIG MORAL BUILDER FOR SURE.

This was taken while I was in rehab. Using my walker. I've been told I have 9 lives.

 

Anesthesia is an option

Patti invited me to Mugsies this a.m. I wasn't sure how I would sleep, so left it up in the air. Last night I don't remember waking up during the night, which is a blessing. First night in a long time. First time ever I turned my clock radio on to a Christian station. I'm not one to be able to sleep with any noise, but last night I did. Eventually I woke up, shut radio off and put my alarm on. I got up at 7 a.m. feeling rested. What a difference sleep has to your body. I called Patti later on, her invitation was still open. It was just the two of us, having a conversation with another local man. It was nice. Afterwards we went to drug store to fill a prescription, then to local church to buy some geraniums.

She told me that receiving anesthesia is an option for cyberknife. As that is her job at this hospital. You just have to request it. Monday I'll take it like a man, without it. Then if needed the next day, I'll have this option. That'll be great if I get a chance to see her on one of these days. A cheerful face, while going through something new. Nice. The first time is always a bit scary. But from where I've come from, I know I can handle this.

Headache this p.m.

During the afternoon I developed a headache, along with the much needed sleep I was lacking. I decided to put a meditation CD in the kitchen's CD player, but you have to understand I can't sleep with any noise. Especially on a couch. This lasted about 2 mins. when I told Barry I was headed to my room, to get into my jammies. I took an anxiety pill, phone off the hook. Tim came home from school while I lay in my bed. It's hard to explain the anxiety I have in order to sleep. I eventually did sleep for about 90 mins., headache has improved but is still there.

I was quite excited to get a quick reply from the neurosurgeon, Danny as he signs his name. That was nice he took the time out of his busy life to reply.

Dr. Dan's reply to my email..

Thank you so much for your kind letter.

I am very glad we were able to help you.



We have a great team. I did your surgery with Dr. Johnathan Engh.



See you soon in our clinic,





Sincerely,





Danny

Letter to Dr. Dan, my neurosurgeon.

This is the email I have just sent to Dr. Dan, who did my brain surgery:

I have no memory of you, but you saved my life. I've been told this by my family. And I went online and found you, miracles do happen. And I'm one of them. This is what I've been told. I don't remember any of it.



On Monday, April 14th I was taken to UPMC Farrell. I was unable to talk. Tests showed brain tumors. I was sent via ambulance to Presbyterian Hospital. On that Wednesday your hands and knowledge, along with any other doctors worked an eventual miracle. The only memory I have at Presby. is the feeling of being helpless, frustrated. I must have known that I was in a 'holding room' and I spoke two magical words to my husband. They were Patient Advocate. I knew this from when my husband is being treated for his cancer. These words make things happen. God gave me the strength to speak those words.



This is the email my sister sent me. For you to recall who I am.



"Tell him u are the one that said "Holy Shit" when u first moved your thumb. LOL He will remember that cuz u kept repeating it It was only me and you with him that day. "





I was eventually discharged that Friday, again no memory. Hospice was mentioned and looked into. I am thankful for the pictures that my family took of me while in the hospital. Even in bad times. They show how far I've come. I proved to be too much for my family to care for. One problem was that the hospital bed, wheel chair did not get delivered until 11:30 p.m. My family had to carry me into the house using a piece of deck furniture. I was in someone else's body. My friend Patti, an anesthesist at Shadyside (at times Presby) comforted me that night. She's just one of my angels. I eventually spoke the word "rehab", a key word sending me back to UPMC Farrell after just one day home.



I always had feeling in my right arm and right leg, speech was slow to come. Words were in my head, unable to get out of my mouth. After one week in this hospital, I was given the green light to be transferred to rehab in Greenville. I stayed there for one week. From learning to lift my right leg for stepping, from forming conversations and slowly being able to use my right arm from home therapy, I am a living miracle.



Next week I head to Shadyside. I am scheduled for 3 40 minutes treatment using cyberknife. 3 separate days, M T and Th. I have to wear a mesh mask, so as not to move. It was fitted personally about 10 days ago. I can see through it, breathe through it. But unable to move. I had a brain MRI when I was there, to get ready for the treatment. Thank goodness I can take anxiety meds. I wish I could just get knocked out. I am not looking forward to it, but I do know that no one has died from having the treatment!



Here's my online journal address. http://jkaminske.blogspot.com/

You can view pictures and my journal entries. This continues to be my therapy. My only complaint is my shoulder, arm. I guess no pain is no gain. Like I've said, I've come a long way baby.



Again, THANKS. I truly would love to meet you some day. But for now, this is my thanks.



May God bless you.

Methodical. Is that the correct word?

Everything I do is methodical lately. From walking to talking, from cooking hamburger helper for tonight (yes, I did) and from waking up during the night to use the bathroom. And last night I baked toll house break apart cookies. All involved concentration, no room for interruption of the process.

One of my wishes is to have a good night's sleep. Without interruption. Without pain. I guess I want it all. Look at how far I've come. I've learned that when I was released from Presby after my brain tumor, that hospice was mentioned. Lisa told me that she had looked up in yellow pages for the information. And tonight I stood in front of her, in the kitchen talking to her. I thank God for this opportunity. And for angels that walk among us.

I have graduated from speech therapy..

I just got discharged from needing a speech therapist. My brain is now working (at least to the extent that it was). I answered all her questions without hesitation.
Now to continue to work on my right arm, which continues to hurt. Heat helped it last night so will continue to use that. I just don't want to lose what progress I have made. It's funny how it can hurt by just not doing a thing. Just hangs there.
I asked the therapist yesterday if she could lend me her technique for messaging. She said no, she needs her arms! If only she can teach someone to do the workout on my shoulder.

Went to the College and saw friends

Today, Tim took me to the college. He needed to get a couple of t-shirts for when he takes a summer course there. Then he accompanied me to see so many friends in the building where I worked. I got and gave so many hugs, best medicine there is.
It's what I wanted to do, so I accomplished a big thing.

I didn't take a nap today, in anticipation of this visit.

PS Therapy this a.m. went well. Woman worked on my right arm. And it surely hurts now. Have had to take some ibuprofen during the day. It must be because she worked it extra hard, even though I didn't complain. Am hoping tomorrow it feels less pain.
Tomorrow, speech therapy. That's no issue for me. Got that covered!

My favorite dancer

I think Yamaguchi will win, but I also think she has an unfair advantage over the others. With her ice skating and dance routines. I am for the not so average, realistic Broadway star. Her name escapes me now. Not your typical dancer. An underdog. That is who I am cheering for.

I took my first bath tonight

and it felt great. Took it with my underwear on and a tank top, just in case I needed help from Tim. And I didn't need any help. Nothing like a hot bath.

Plus I put away some clothes that had not been put away in awhile. My clothes.
For therapy I fold clothes, someone takes them upstairs for me, and then I put them away. My room is a little neater.

My favorite show is on tonight. Dancing with the Stars. Can't wait to watch it.
Even when I was in the hospital, I watched it.

Tomorrow a.m. is going to be busy. Physical and occupational therapy are coming.
No one came today. My a.m. will start at 9ish.

Typing is slow but accurate

I am typing slow but accurate, that is good. My fingers sometimes shake a lot as I'm typing. Thank goodness my brain knows how to spell words. It's a slow process, but I have all the time. It's good therapy to use the fingers.

More of Tim at the Grand March.

Mo's Mother's Day Outfit!

One of the best Mothers Days I've had

It began when I went to Presby. church to hear Rev. Lisa H. give the sermon about the circle of friends as a means of support when the times get tough. She spoke about her own situation, but I could certainly personally relate. That's why I shed some tears, tears of strength and tears that showed how far I've come from just 3 weeks ago. The Pres. of the College where I worked was there with his wife, and just too many other friends including the Chaplain of the College who visited me at the hospital on his day off. Thanks to my angels Becky who sat directly behind me, and Patti who sat next to me and offered me kleenex and a hand to hold. I was able to stand up and sing proudly with their support. It took me awhile to leave the church as many were coming up to say hello, you're looking great. Many were in awe seeing me. It was a good day.

Tim went shopping for gifts after church with a friend. He bought me 2 candles, aromatherapy spritzer for the sheets and pillowcase along with body lotion aromatherapy. Both aromatherapy fragrances are to help me with the sleeping. I sprayed by pillowcase and sheets, lotioned up my hands and under my nose, took an anxiety pill and lied down. I slept for over 2 hrs. It took me awhile to fall asleep, again with phone off the hook. But I was amazed to see the clock said 5:30 p.m. Don't know if it was the fragrances, but will continue.

As planned Tim took me out to dinner after we napped. It was a secret, Red Lobster. A good choice. I love their dinner biscuits. I had fried shrimp and shrimp scampi. It was so tasty. Nothing wrong with my appetite. After dinner I asked Tim to bring me to Barry's job. I wanted to show off. I walked in with a cane and a smile. They were amazed. I said "I am a survivor". And they agreed.

So as you can see it was a great day, in spite of the drizzly weather.

Happy Mothers Day!

To my mom, and to Barry's mom, and to everyone else's mom.

One year ago, I was in the hospital. And here I am once again. Getting ready to go to Presbyterian church. 10:30 a.m. Anywhere there is God I'll be there. I get to see so many friends at church. Today I'll keep Patty company in the back row.

As for sleep. What's a good night sleep? The longest that I sleep is about 4 hrs. and then up with sore back/sore arm. My goal is to get rid of the shoulder pain, to be able to use it like before. To raise it up without difficulty. That is my goal.

Filing of bills/receipts is almost done..

Barry bought a new file cabinet. The one we had always got stuck. I just got done (almost) from filing weeks and weeks of receipts in the new file cabinets. Accomplished a lot. Now I'm pooped.

I think I'm going to attempt to balance a past statement. That will be a chance to see how focused I am. Barry had to take over the bill paying, which he had never done. But the need was there. He does a lot of online bill paying, even got a check writing program. High tech.