CSN Login
Members Online: 3

things seem to be staying the same for the most part....

cindysuetoyou's picture
cindysuetoyou
Posts: 508
Joined: Dec 2009

Hello, everyone.

I haven't been responding to posts like I meant to and now I can't find most of the posts that I wanted to comment on. I am going to go through the different discussions and try to respond but I know that I will miss some. Please forgive me if I miss an important post and I seem callous for not responding. I seem to be scattered in my thinking and my memory is pathetic. Sometimes I think of what I am going to write to someone, and even though I never wrote it, I've thought about it so much that I get mixed up and think that I actually did write...>sigh<

We seem to be on a plateau right now. I am just living one day at a time. David has recovered really well from that abscess/infection etc. thing that we went through in Jan. and Feb. We have an MRI and an oncology appt this Thursday.....I don't have to tell you guys how that makes us feel. Dreading it.....I am expecting one of two things...one: they will say that there's some progression but they are going to do another disruption treatment ASAP. Or two: there's too much progression and the mass effect is too great for David to withstand another disruption, and they will just do intra-arterial chemo. I don't think IA chemo will help very much. It didn't do that much the first (and only) time that David had it. But it's better than nothing.

Of course, there's a third possibility...there could be so much tumor growth that they will say no treatment. But I don't think that's going to be the case. I don't know why I feel that way....I just don't think so.

David is still staving off seizures about 2 or 3 times a week by taking Lorazepam. He starts to feel one coming on, usually in the middle of the night, and he takes a Lorazepam and then he's okay. But he will sleep all of the next day.....til the evening, like 6 or 7 pm. The Lorazepam is one mg but on top of everything else (Keppra and Gabapentin, morphine, etc.) it just totally wipes him out.

So I am noticing some things being off with David. But why? It could be from a bunch of things, or a combination of things. It could be from the seizures, the medicines, the tumor, being so tired....who knows? The drs don't know. I sure don't know. But he's doing okay.

Some of the more recent posts on this site motivated me to make sure that David started getting more exercise. I know that exercise is super-important for his physical and mental health. So we decided to take a walk. Before I had a chance to say anything, David had his little doggie on a long leash, the kind that retract when you push a button. I didn't want to take any dogs but David really wanted Jackson to come with us. So off we went. We'd gone about 3 blocks and that dumb dog ran around David's legs and tripped him. David had his hands in his pockets and barely got one hand out to break his fall. He broke his fall with just one hand, and he really banged it up good. He fell down hard. His hand swelled up like a balloon and turned black, the palm and the back of his hand too. I gave it a day to see if it would get better but it looked worse so we ended up in ER and had to get X-rays. Just badly bruised. It looks bad because he's on enoxaparin---the blood thinner shots.

Speaking of enoxaparin....our insurance company from HELL is giving us trouble about getting those shots. They don't want to pay. They are $3,000 a month. I think our dr worked it out for us but I won't be able to relax until the syringes are in my hand. I am supposed to get them from the pharmacy on Thursday. They had to special order them. It's a good thing that I started working on a refill about 5 days ago or we would have run out and been in big trouble, going through all of these hassles with insurance.

David spends a lot of time in bed, resting, sleeping, and watching TV. I hope you guys don't think this is weird, but I've been sleeping with David. I just put on my sweats, wrap myself in my horse fleece blanket, and curl up on the king bed with him. Originally I started sleeping with him when he was having all of those seizures in the middle of the night. We were both scared. Now it's just a nice habit. We watch TV together....I'd never watched "The Office" before and we have xfinity so we are watching that show together and doing a lot of laughing. We have little tug of wars over the remote and we eat popcorn and snacks together....and I have to tell you guys.....I wouldn't trade these times for all the money in the world. Sometimes we just lay there and talk about stuff....things we did as a family when all the kids were little and still in school, the vacations we took, the funny things that have happened....what the future may hold....sometimes my heart is broken, and sometimes I cry because I am so glad for the times we have together. It's a painful, sweet, special time of my life. I think I will cherish these memories for the rest of my life, and I'm glad that I am spending this time with David. My husband works graveyards, and he understands. We both think that David is lonely at night. I am so glad that David is living with us and we can be there for him.

David has gone out for dinner with his friends, and he even played 18 holes of miniature golf. He went to a birthday party on Friday night, and then out to a sports bar afterwards. He was pretty wiped out the next couple of days...he has no stamina or strength. He is still really, really weak. He totters sometimes when he walks. I think it's from all the medication. But it was good for him to get out. I asked his close friend if he noticed a change in David, expecting him to say that David seems weaker or more forgetful, and instead he said that he could tell that David seemed more upbeat and positive. What a lovely surprise! Not at all the answer that I was expecting.

Like I said, there's definitely some things that are different with David, but we don't know why. Like he had trouble doing a kid's puzzle. But in other ways, he seems to have total clarity. When I heard that he was going to that sports bar, I texted him to be sure to take some Lorazepam with him, and to be sure not to drink anything. He wrote back, "Don't worry, Mom, I'm totally down with not drinking. I don't want to steal the show by having a seizure right in the middle of the party." Made me laugh!

So...Christy and I were shopping and Larry called me and said that David went to that party with two different shoes on his feet. David was wearing one of Larry's Adidas and one of his own Nikes. I was so sad and upset....David has always been so particular and picky about his dress and appearance, and it's so upsetting to see him slipping like that. Christy and I were talking about it while we were shopping and I said that I could handle David not being as sharp but it scared me because I wondered if he was on a downhill road. We got home from shopping---Christy and her husband Tommy and their two kids live right next door---and Christy dropped me off and then came over. She had an Adidas shoe in her hand and she said, "Mom. David didn't go out with two different shoes. Dad came over and took his shoes off, and when he left, he put on one of Tommy's Nike shoes and one of his own Adidas shoes and went home." I thought a minute.....and I said, "No, that was me! I just slipped Dad's shoes on for a minute to come to your house earlier today to get some ice, and I must have put one of Tommy's shoes back on by accident when I went home." We had a good laugh over that one! My point in telling you this story and what a moron I am is that.....I can get so worked up by a total misperception. I spent most of my shopping trip mourning some perceived problem with David that didn't even exist...and on top of it, I was the one who had the problem, and I'm not all worried and freaked out because I'm doing weird stuff. So what other perceived problems do I see in David that might not even really be a problem? I don't know.....

I'm enjoying the good in each and every day, and fighting not to let the bad things overwhelm me. I'll post our MRI and oncology appt results on Thursday. Later tonight I'm going to try to go thru all the threads and discussions and try to respond. I've especially been thinking and praying a lot for connsteele and David, and Raani and Jacob, and Edna and Sarah. So many of you are in my thoughts and prayers all the time.

Love and blessings,
Cindy
in Salem, OR

Raani01
Posts: 70
Joined: Mar 2011

Cindy, I was going to start a new thread wondering about you. Thanks for your post and comforted to learn that David is doing ok by the grace of God. Jacob had an MRI yesterday night and I am waiting for No's call about the result. We are in a situation of repeated radiation or no radiation. Jacob is very slow and very weak cognitively. NO was very discouraged to see his current state. I am in a numb state. I think about Connie and her David all the time these days...

All,
One of my friends sent me the following dr's info. What are your thoughts about this.
Dr. Stanislaw Brzinski
Anti Neoplastin Therapy
Huston, TX
http://burzynskipatientgroup.org/jamie-brown

cindysuetoyou's picture
cindysuetoyou
Posts: 508
Joined: Dec 2009

Hi, Raani.

I am so sorry to hear about Jacob's situation. It's so hard seeing the ones we love having such a hard time. I hope and pray that Jacob's MRI has some good news...and that radiation or some treatment can help him.

How fast things can change...for the better, or for the worst. Unfortunately for us, David has taken a sharp turn for the worse. Please pray for him. I'm going to start a new thread because I get confused when some of these threads get longer. I can't find stuff. I'm way behind on replying to several people here and now I'm afraid I'll never find the posts that I wanted to respond to.

I will continue to pray for you and Jacob---please keep praying for David.

Love and blessings,
Cindy

PS I've seen both good posts and bad posts about the Brzinski Clinic. Personally, I am suspicious of him and his treatments. I've based my opinion on what I've read about him and his treatments when I've googled him and researched his stuff online. i've never known anyone personally who has gone to him. I don't know if that's much help....I'm interested to hear what others on this site will say in response to your question re: Dr. Brzinski.

connsteele
Posts: 232
Joined: May 2011

Personally, I think Brzinski borders on quakery...he promises you the moon (which makes me suspicious right there), along with a huge downpayment of your own money as insurance won't cover is unproven treatments. I know there was a movie made about him, with all these glowing testimonials. But I have a gut feeling that the movie was probably financed by him or his business/marketing empire. My feelings about him were validated when I read he was also starting to market his cancer treatment as an anti-aging face cream.

It is so hard to know what to do when one feels at the end of one's rope. You have to do what you feel is best. And if researchig and going to his clinic gives you peace that you have tried everything, and you can afford it, then I understand why you would seek out his treatment.

Peace to you as you try to find the right path. As for us, we are taking David to Columbus tomorrow for one more Avastin treatment, even though his NO thinks it won't make a difference. For me, I won't have peace until we try this one more time. I know it is palliative, but if we can add just one day of quality of life for him, then I want to try it.

Best to you, it;s a hard road we are on.
Connie

Subscribe with RSS
About Cancer Society

The content on this site is for informational purposes only. It is not a substitute for professional medical advice. Do not use this information to diagnose or treat a health problem or disease without consulting with a qualified healthcare provider. Please consult your healthcare provider with any questions or concerns you may have regarding your condition. Use of this online service is subject to the disclaimer and the terms and conditions.

Copyright 2000-2014 © Cancer Survivors Network