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.
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.....
Last Edit: Apr 6, 2014 12:23:46 GMT -5 by bluepride
Oh my God !! I can't believe the news about Frank and Steve. They're such nice people who don't deserve such drama. The last time I spoke to frank, I did tell him to take care of himself while looking after Frank. I never thought that he would wind up sick as well. I'll hold off on calling Frank until Steve is stabilized. In the meantime I wish them both well.
Frank called me yesterday and again today. He says Steve has improved and in fact may be released from the hospital today. Frank had just left his doctor's office and told me that his numbers were good enough that the doctor put him on his new round of chemo today. It is in pill form and we don't know what the side effects will be, if any. But Frank has been absolutely giddy the last few days! One reason is that his doctor cleared him to be able to attend the NYPD Dinner/Dance that we go to every year. He is bound and determined to attend! The doctor also told him that he can drink the dreaded alco-hol as well! Frank is as happy as a little girl! And it looks like Steve may be joining us at our dinner as well! Steve never (well....hardly ever.....) attends cop functions, so this is great news for all of us! We're gonna turn that place out! Frank is going to give me more updates tomorrow. In the meantime between now and May 1, I seriously need to buy a new "fat suit"! Right now I can't fit into any of my normal regular suits. The first one of you who makes a wise crack is gonna get hit in the head! It's great to hear Frank sounding so chipper....I swear I heard him clicking his heels in the street yesterday! Let's hope there will be no negative side effects with this latest round of chemo though...
Last Edit: Apr 9, 2014 17:55:14 GMT -5 by bluepride
Guys, honestly I cannot thank you enough for all your kind words and good thoughts. And Tommy, thanks so much for keeping the others up to date on what's going on in this household (2015 cannot come fast enough!).
As Tommy noted, I 've been home since March 1 but, other than just checking email, I haven't done a damned thing on the computer for over a month and a half. Tonight is the first time I've signed into BluePride since returning to the "real" world and I must say, I was overwhelmed reading all postings. You guys are absolutely the greatest. And Bear, thanks so much for the links. I started to read them as I was going through the posts, here, but then decided that, in itself, might take a long time, so I just sent the links in an email to myself and will get back to them later.
Let's hit the good news first. Yes, I know there's a lot of crap going on inside my body, but outwardly I feel great. If anything, maybe a little slower in my gait, but I'm walking all over the place...to and from doctor appointments, the grocery store etc. Today was the longest...about 20 City blocks which equates to about one mile. A little tired, yes, but not washed out by any means. Hey, a good part of that could be age! And this may sound counterintuitive but after the oncologist drew the bone marrow a few weeks ago he was pleased to report that only half of the cells were leukemic. I guess compared to where I'd been at the start that IS an improvement.
The oral chemotherapy (one pill, twice daily) hasn't produced a single side effect and I can only hope it's doing what it is supposed to do. In the meantime I still see the oncologist once a week. Blood tests are done each time and there's a whole bunch of numbers that keep going up and down, but nothing the doc seems to be worried about. When he sees the white blood cell count decline he gives me a few more shots of something called Neupogen to bring them back up. Can't wait for my body to do the work itself but, hey, life hands you lemons, you make lemonade. I just have to deal with it and not be impatient (easier said than done).
I noted in some of Tommy's comments that he remarked on my general upbeat attitude, and Bear's pointing out that this, in itself, is a great asset for someone going through this stuff. Well, I certainly changed a lot back in '97 when I had the heart attack. Before that I used to worry and overthink everything, but that episode turned me around in the sense that, now, I worry about those things I can change, and not about those I cannot change. A day at a time. [Yes, I know I sound like a PSA for Alcoholic's Anonymous, but the philosophy is sound.]
The month of March was really one of slow recovery, as could only be expected after three solid weeks in bed in the hospital. Lacking strength and energy but trying to do as much as I could, a little more each day. Mentally my mind was still fuzzy...not spaced out or anything, but not really able to concentrate on things as a "normal" person would. And that was NOT a good thing as I had income taxes to do and get posted by April 15! And this year was the first in which Steve and I could claim the status of "married filing jointly" so it took a little more effort to figure out exactly what changes I had to consider vis a vis prior years' returns. But it got done...by the 14th! I was early. Of course, as Tommy has related, during this time Steve was the one to take ill and be hospitalized. The care receiver became the care giver. But there are no complaints. He had a much tougher go of it than what I'm going through, but that's what couples do for each other. He's home now but the question of what continues to cause his chronic cough is still unanswered and he has another doctor's appointment this Thursday with a throat specialist. Let's hope they find the cause so they can know what they're treating rather than do a trial-and-error range of Rx to see what will work to resolve the issue.
I'm reminded of Maurice Chevalier, whose words I can but paraphrase: "Getting old is a bitch...but it sure beats the alternative!"
Anyway, enough of the soap opera for now. I just wanted to thank all of you and to bring you up to date. Hugs and kisses to all.
Burner, Glad to see you are back to feeling like you again. Sure you aren't 100% yet, but that's just a yet.... You and Steve are lucky, that no matter which one of you is down at the moment, the other is there to help support each other through it. Many positive thoughts go out to you both!
Last Edit: Apr 22, 2014 19:18:07 GMT -5 by hcsodale
OK....here's the latest....As was said earlier, Frank started his round of the newer chemo drug a couple of weeks ago and he had no side effects and was feeling great. And Steve was slowly but surely improving. It seems that Steve's problem may be caused by acid reflux, according to Frank. So at least we know the cause and now look forward to the healing. But...as of earlier this week Frank's doctor didn't like his response to the latest chemo so he upped the dosage. And Frank has been having some side effects including some fatigue. This battle isn't over yet. We're all determined to see that he gets through all of this unscathed.
He called me the other day to let me know that he and Steve will be unable to attend the annual PD dinner that we usually go to every year. This would make Steve's first time coming so it would've been more special. But due to the side effects, Frank didn't want to take the chance tonight. I understand completely although there is going to be such a void that he and now Steve won't be able to attend. This would be the first time in 13 years that Frank will be absent. So it's only me and one other going tonight. It's going to be nice but it will not be the same. Let's all just hope that the side effects dissipate and that Frank and Steve are both back in tip top shape soon.
Sending you SMILES and good wishes, BluePride. Yes, you are right... the annual PD dinner will not be the same without Frank and Steve. So, it's our responsibility for all others of us who cannot be there to send good karmic juju. Frank and Steve would want it to be a festive event so they too can feel the spirit of happy goodwill.
The CARE is in the CARING. M.H. - Thanatology / Traumatology - MPH, MS, MS, LSPT, CT, FT, CPE
I have to say that the dinner was a success and I actually had a very good time. But Frank and Steve were definitely missed. Some folks who remember Frank from previous years were asking where he was and when I told them, they were very concerned. Steve would've liked the whole evening. We had the "coo-coo" table! A couple of folks (besides me and my friend) who I consider to be....a little "out there" at times, (in a good way!) were at our table, so there was no lack of laughs, spilled drinks and good-natured ribbing. And gossip....a lot of gossip.
The main honoree was a Chief who had just announced his retirement. I don't like him. Never did. A homophobe who made himself look like a major A-hole about 10 years ago. In the newspapers, etc. There was no way I was going to stand for him, clap for him or acknowledge him in any way. And I stuck to my guns. While he was giving his boilerplate, boring, predictable, unpolished, condescending and predictable acceptance speech I took the liberty of asking,(out loud) "Can someone pass me the butter?" (tee-hee) And not to be outdone, in addition to being a homophobe, there are a lot of active and retired cops who have absolutely no use for him. A few of them made a beeline for the exit when he was introduced. I swear I saw a slight dust storm at the feet of someone leaving the room; he practically knocked people down to get out into the lobby! So, I'm not alone in my disdain for this jerk. Frank would've loved all this!! Well, maybe next year they'll give an award to another idiot. (I hope it's not me!) P.S. : At the cocktail hour I was with a friend who had brought another friend (A young Greek Orthodox priest) to the event. A nice guy and later he sealed his fate as "cool" when he referred to someone as a douchebag! Awesome! Made my night!
Last Edit: May 3, 2014 18:52:23 GMT -5 by bluepride
This roller coaster ride continues. Frank has suffered some setbacks since my last posting. Fatigue, loss of appetite, shortness of breath and the need for platelets and transfusions to help bring his red blood cell count to normal are what's going on right now. He has lost some weight, his immune system is compromised and he is tired most of the time as well as having what apparently is a constant fever.
This is really disturbing to me. At this point they are not looking to readmit him to the hospital but that may change. Please keep Frank in your thoughts and prayers. And Steve as well.