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Post by Deleted on May 20, 2014 8:31:32 GMT -5
Just thought I'd give a quick update on our favorite patient. He's home and the last week or two has been pretty much waiting for his white bloods to go up. And now it seems like the desired number has been reached and his doctor says he has responded well to the chemo. He still is very tired and sleeps a lot. I haven't spoken to him because I don't want to interrupt his sleep but I've spoken to Steve. He was getting injections of a drug to raise his white bloods as I've said. Next, he is scheduled to undergo another round of chemo, which will be in pill form. Before that happens he had to have another spinal tap to see where he stood as to the effectiveness of the past treatments. Unfortunately he had a very bad reaction to an anti-pain injection about two days ago. Things have stabilized as far as the reaction goes and he was napping earlier when I called. I would imagine that the next phase will begin within the next week or so. So....he's holding his own for now and he is getting the rest that his body needs. Let's hope that this next phase goes quickly and he recovers fully and gets back on his feet and he gets on that road to complete recovery. We all want that for him. And please keep him and Steve in your thoughts. Steve is doing a herculean job attending to Frank's needs. And I tell him all the time to make sure he is taking care of himself as well. I'll give another update when the situation warrants. OK...time for another update.....this has really been a roller coaster ride for all concerned....First off....Frank has been home for a few weeks and is feeling good and he sounds great. He is waiting to begin his next round of chemo which will be in pill form this time and it will not be in a hospital setting. His doctor even cleared him to drive upstate to their other home. BUT.....now his other half, Steve, is hospitalized. He was feeling lousy lately and had what was thought was a bad cold. Frank took Steve to Steve's doctor and he could not find anything specifically wrong. Then Frank took him to Frank's doctor who has him go to the ER. In addition to anything else that was wrong with Steve, he had a case of the hiccups for about 2 weeks.
As of now the hiccups are gone after some medicine and Steve is still very hoarse. There was an MRI done yesterday and I'm sure I'll hear about the results soon. Frank has been doing the care taking where Steve was doing that a few weeks ago. I'm thinking Steve's problem has it's roots in stress. But who knows? I'm worried for both of them.
I'm going to copy & paste an e-mail that Frank sent the other day to further explain things....If he tells me to, I'll delete it. But for now it will bring things up to date better than I can say it. Here goes:Just a quick note to let you know that ...... (a) while I still have a lot of bad stuff going on inside me, in general I feel pretty good. Haven't started phase 2 of chemotherapy yet, but will worry about that when the day comes. (b) now it's Steve who is in Lenox Hill Hospital with who-knows-what. I brought him over to the ER yesterday (Thursday) at the doctor's suggestion and he was admitted. They don't know if his problem is pneumonia or something else, but they'll do what they have to do and I'll keep you all advised. Thumbnail background: Two weeks ago (on a Friday, naturally) he began to cough, sneeze, have a sore throat and hiccups. OK. First three we've all gone through. They last maybe for a week and if we take care of ourselves as often as not they self resolve. But hiccups should NOT last for 12 straight days practically non-stop. Started on a Friday, he sees HIS doctor on Tuesday. Doc takes blood and urine, says he'll have results and get back to him on Friday. Offers nothing about the hiccups but puts Steve on an anti-viral which, two days later I make him stop. It's making him loopy, zombie-like, spaced out. Figure we'll hear the next day anyway. Friday comes and goes. Steve calls first thing Monday morning and leaves a message for the doctor to call back, which he does...at 6:30 p.m. Tests are negative. Steve brings up the hiccup problem. "Take a spoonful of grape jelly," is the response. [The guy is tops in his field when it comes to Diabetes, but sucks as a primary care]. The next day (Tuesday) I take Steve to My doctor who spends an hour and a half with us, probing, questioning, ruling in, ruling out. By this time, of course, Steve is totally debilitated from the constant hiccups, and maybe something underlying that is going on in his system. Tired, weak, shuffles when he walks, falls asleep sitting in front of a blank computer screen. My doctor draws blood, has him go for two sided chest X-ray, suspects bacterial infection, prescribes Doxycycline and prescribes Chlorpromazine for the hiccups. By Wednesday afternoon hiccups had remained at bay for 12 hours straight, but began again in early evening. I called the doc who said to give him an extra pill. I did. It worked. But by the wee hours of Thursday morning the weakness got so great that Steve was hardly able to walk and began rough coughing which only irritated an already sore throat. Then, when lying down, he'd complain of having difficulty breathing and pressure just above the chest but below the throat. I called the Doctor who told me to call 911 and get him over to Lenox Hill ER, which I did. Spent the entire day in the ER (had an EKG, another X-ray taken and a CT scan, but a good part of it just waiting for a bed). He was finally placed in a room at 11:30 p.m. I got back home around 1 a.m. and got my first uninterrupted sleep (all 4 hours of it) in three days. Aren't you glad that was a "thumbnail" summary? Sorry, but they tell me if it can be said in 10 words I'll take 50. I'll keep you informed of the latest in this soap opera. Frank
So....this is where we are right now. I'm glad that Frank feels better and I'm upset that Steve is going through this stuff now. He's already been through the wringer, as has Frank. Neither of them deserve this. They are both top notch people. More info as it becomes available.....
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Post by bluepride on May 27, 2014 18:14:06 GMT -5
I hope everybody had a good Memorial Day. I felt the need to give another update at this time. Frank has been back in the hospital for approximately one week. He has had some setbacks that I would call serious. There have been improvements and there have been setbacks. Right now I'm not prepared to go into details about any setbacks. Maybe next time. During the long Memorial Day weekend the hospital, specifically Frank's area, had been staffed by backup personnel. I think it's fair to say that some of them had their heads up their butts. Although they say that they were in phone contact with Frank's doctor's during that time. One good thing is that his appetite has improved a lot. He does have some infections that were caused by the PICC that he had which allowed him to be hooked up to chemo. That is being dealt with. I'm not sure how successfully. And it is very possible that he may have had a mini stroke while in the hospital. That is not 100% confirmed as yet. I haven't spoken to him in a couple of weeks because I don't want to bother him. But I've been speaking to Steve and he has been keeping me updated. One thing that bothers me about hospitals and doctors is incompetence and laziness and forgetfulness. Everyone tells me doctors are human but I say "no, they are DOCTORS". They're not supposed to forget what procedures they're doing on a certain day. That's all I'll say about that.
Before I start ranting unnecessarily, let me just ask once again for everybody to keep Frank in their thoughts and prayers. He's been through hell and back since February and every time he comes back from hell he ends up going back. I want him back 100% and soon and I think we all want that. So please, keep the good thoughts coming in Frank's direction and in Steve's direction. Thanks.
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Post by TheBear on May 27, 2014 20:24:14 GMT -5
We are indeed thinking of Frank and Steve often. We continue to send Positive Energy into the Universe for his recovery.
As a medical type, I agree with your words of frustration about doctors, BluePride. That has sooo often been my experience too. There are the few who are truly dedicated physicians. Alas, they are spread so thin that even they are often stretched beyond their abilities.
Smiles and wishes for comfort and recovery for both Frank and Steve.
Bear __________________.
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Post by Deleted on May 28, 2014 10:08:30 GMT -5
Bluepride,thanks for the update on burner. Do you think it would be ok to stop by and see him next Wednesday? Sorry I have not been on recently. today is the first day my computer would let me.
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Post by bluepride on May 28, 2014 14:11:10 GMT -5
I'm glad you got a new computer.....now...stay off those malicious site you frequent which can damage the machine!
I would clear it with Steve as to whether you should visit Frank. He hasn't wanted any visitors as well meaning as those visits would be. Myself...I haven't seen him since last August but I do want to see him too. He may be going home within the next day or two.....and then....maybe not. Everything always seems to be up in the air lately. It is very frustrating to Steve as well as Frank. He'd be better off at home as long as things are somewhat stabilized. I stress again how glad I am that he's apparently eating everything in sight. Even things that Steve said he'd never liked before. The more nutrition he gets, the better. These are trying times.
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Post by bluepride on Jun 14, 2014 19:06:22 GMT -5
Frank has been home for a couple of weeks now. He was continuing to have problems while at home and he was very tired most of the time. While at home there were continuous trips to the doctor. I spoke to Steve earlier today to get an update. Well it turns out that Frank is showing some definite improvement. There is a new chemo going on and so far there doesn't seem to be any negative side effects. In fact about a week ago Frank and Steve went to lunch with one of our members here and actually walked the entire length of a street fair. So it looks like Frank is taking baby steps, so to speak, and it looks like he is somewhat successful. As long as he does not over do it.
While I was on the phone with Steve I could hear Frank talking in the background. And I'm glad to say that he actually asked Steve to ask me if I'd like to get together with them for dinner one night next week. Of course I jumped on that. So next Wednesday I'll be getting together with Frank and Steve at a local restaurant in the neighborhood. I think it will be good for Frank to get out and I know that would be great for me to see him and Steve. I haven't seen Frank since last August although we spoke many times since then, before and after his illness. I am so psyched for next Wednesday!
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Post by hcsodale on Jun 16, 2014 12:00:59 GMT -5
That sounds great! Just try not to go getting Frank all liquored up, he probably shouldn't be swinging from the chandeliers just yet..... Besides, he probably doesn't need to be worrying about carrying you up some stairs to watch you pass out on a couch. Yeah, don't we all wish! Hearing about any of his improvements is great. Please convey my best to Frank and Steve.
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Post by bluepride on Jun 17, 2014 14:03:38 GMT -5
I promise I won't let him get all liquored up....but you never know with that ol' lush. I would never let myself get passed out on a couch. I have a reputation to think of....(I didn't say it was a good one )!
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Post by bluepride on Aug 18, 2014 14:59:16 GMT -5
Seeing how it's been awhile since my last update on Frank, I figured I'd give you one. We had dinner about a month and a half ago, just me, Frank and Steve. An awesome night! He had a little trouble with some of his speech here and there and he had lost weight but his attitude, spirit and determination were all top notch. He did end up back in the hospital not too much later because of a reaction to a transfusion but it was taken care of and he was back home. He put back some of the weight he lost and had/has been feeling better. Except that sometimes he gets winded while climbing stairs and things like that. But he has been able to drive upstate to their other house on the weekends and return for more treatments during the week.
But...seeing how he has sort of "plateaued" with no real improvement lately, he and Steve decided to seek another opinion from a doctor who came highly recommended and trusted. This doctor pointed them in the direction of yet another doctor who has done some tests and as a result, Frank is now affiliated with the doctor and another hospital. It looks like he will be admitted for yet another round of chemo and treatments with the new guy. They really seem to like the new guy and are encouraged by what he has to say. So...a new page opens up in this saga and hopefully, it will give good results.
Frank called me last week and he sounded great! Like a 30 year old! His speech has markedly improved and I'm sure it won't be long before any speech problems are in the past. He is in good spirits and we had even made tentative plans to get together for dinner again. With Frank and Steve actually driving to where I and a few other friends live! But now with the new treatments that is understandably on hold for now. He and Steve are grateful for the real sincere messages of support and concern.
As for myself...just an FYI. This summer's weather has been topsy turvy and one night last week I slept with my windows open, without any blankets and ended up with a lousy sinus/lung/bronchial bug. I should've prepared better but I actually enjoyed the wind, the breeze and the cooler weather! So I've been under the weather since the middle of last week but I'm about 95% better! I felt like crap!
But Frank is going into another battle, if you will, so let's keep our thoughts focused on him. And Steve!
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Post by bluepride on Oct 24, 2014 9:08:41 GMT -5
It's been a while since I gave an update on Frank (burner). He was holding his own for a while, feeling better while continuing to receive platelets, transfusions and chemo. He has even called me a few times, which he only does when he's feeling good. But in the last couple of days, his temperature went up to 104, he has been weak and unfortunately, he has suffered another mini-stroke which has affected his speech again.He also has a blood infection and pneumonia. He is back in the hospital. This whole ordeal has not been easy for him or for Steve. I'm very worried right now.
Unlike a few months ago, there haven't been as many inquiries to Steve and/or Frank about his condition. In a way, this is good and in a way this is not good. People do have their own lives, I get that. I'm not saying this to inundate Frank or Steve with tons of phone calls, etc. Right now, they probably don't need that. Sometimes the calls are counter productive. There is one person who was told numerous times to NOT call because after about 30 seconds, the call becomes all about him for the rest of the call. But he continues to call and gets hung up on. They don't need self-absorbed people calling them. Or phony baloney "sincerity" calls.
Now that I got that bit of venting out of the way, I'd just like to ask once again if anyone reading this would please, please keep Frank & Steve in their thoughts and prayers. This has been an extended battle and has not been easy for anyone. There is so much going on in our lives and in the world these days. But, if some good thoughts and prayers could be sent in Frank and Steve's direction, it would be so appreciated.
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Post by bluepride on Oct 26, 2014 19:24:06 GMT -5
Please....now more than ever....prayers are needed. Thanks.....
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Post by bluepride on Oct 27, 2014 21:56:15 GMT -5
I don't feel comfortable going into details right now but I'll just say that I wasn't sure little Frankie Stardust was going to be here tonight. But in speaking to Steve earlier, he tells me of some surprising minor improvement since last night. He's in ICU and conscious, which wasn't the case last night. A little fidgety with a ventilator down his throat. One of his doctors said the vent might be out in a day or so, depending on how things go. And he (the doctor) was talking about future treatments he has planned. So...things are still really bad and the roller-coaster ride has increased in speed. I'm thankful that I didn't get a middle of the night phone call. Maybe the prayers and thoughts are doing some good.... PLEASE keep them coming......
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Post by bluepride on Oct 28, 2014 15:35:52 GMT -5
Having dinner with Steve tonight. Frank is a fighter and as bad as things are right now....we have to have hope. Please....good thoughts and prayers......
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Post by bluepride on Oct 30, 2014 20:25:03 GMT -5
Frank had a heart attack sometime between last night and this morning. In addition to everything else that has been going on. About 1PM today while I was mailing him a birthday card (His 75th birthday is Saturday November 1st.), I received a text and a call from Jimmy (maxwelldaemon) to call him back about Frank. Steve had called my house but he must have just missed me. I got back home ASAP and got Steve's message. He asked me to come to the hospital. I called him back and told him I was on my way. It took a while because of traffic but I got there. Frank was awake, alert but tired and unable to speak because of the tubes down his throat. To be honest, I thought I'd arrive "too late" but that wasn't the case. He knew I was there and Jimmy as well. Things are not good. It seems like a waiting game at this point. I spoke to him, knowing he really couldn't respond but he raised his hand and we held hands for the longest time. When I would take my hand away, he'd grab it and continue holding it. As tight as he could. At one point, I told him that he'd dragged it out of me finally, but I told him that I love him. He knew that already though. In the last 24 hours, with liver and kidney problems, as well as the host of other things, there had actually been improvement. But I'm not going to be unrealistic.
Knowing how much he loved 50's music, I started to sing. (As if he didn't have enough problems...) I sang "How Much Is That Doggie In The Window". He definitely reacted. He appreciated it and I'm assuming he tried to smile. I told him I'm no Patti Page but that was the best I could do and that I didn't know the words to "Old Cape Cod". He knew I was trying to make him happy in the midst of all of this stuff. After about 4 or 5 hours I felt it would be best to leave and let him get his rest. Steve appreciated me and Jimmy being there but there were some family members who were going to be coming and I didn't want to be in the way.
So...as I say...now it is a waiting thing. Who knows how long? Steve is relatively calm but we all have our moments. On the one hand, I want to be as selfish as possible and get Frank up and out of there. On the other hand, there is stone cold reality. Once again, I ask for prayers and good thoughts in his and Steve's direction. Please....
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Post by edmontongreg on Oct 31, 2014 16:17:51 GMT -5
Thanks for the update. I pray this turns around.
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