Frank’s Corner

It seems like so long ago when I was researching ways of getting traffic to our web site and decided a blog, where I could talk about the family, business, what we do at church, how we solve the inevitable difficulties which crop up and new or at least different, if not novel, ways of doing things, would be a good way of enticing people to the web site and eventually cause them to think of us for their videography needs. I’m finding like so many, and so much wiser people, before me that life has its own way of dealing with our plans and changing them, sometimes in small almost unnoticeable ways and other times like being hit with the proverbial “ton of bricks”. As the dust settles I find myself still standing -well sitting here- looking for ways to grow our business and I think we’ve got one, but have to do allot of research to on do it and probably some equipment buying to make it work. More on that later.

Yeah, that was a good title and a good start - To bad I wrote it a month and a half ago, somewhere around the mid June and now we’re almost through July! Well its more like being hit by a railroad train named “tired all the time” I’m under it on the track, its going real slow, I turn my head so I can see the sky between the wheels. Sometimes I even get so far as to stick my head out, but before I can completely roll out from under here come the next set of wheels and I just seem to be stuck here.

We’ve been doing blood work every 2 weeks and over the last 3 months my platelet count has averaged 63 without going over 70. At my last Dr’s. appointment we talked about my being constantly tired and my wife told the Dr. she could always tell the day I took the Prednisone, slow healing of cuts and bruises, the spiking of my blood sugar levels, damage to the immune system, and that continuing the Prednisone could also lead to Osteoporosis. We talked about a Splenectomy, to which we said no because CT & PET scans did not show it to overly enlarged and therefor not necessarily involved in the ITP or CLL and its something we could not undo. Dr. suggested looking at Rituxan, which although not approved for ITP yet, has had at least one good trial and she’s used it on several patients for ITP with good results and my insurance should cover it as it is approved as a front line treatment for CLL. Of course Rituxan has a whole host of its own possible side effects, but continuing the present course is not really an option anymore so this seems like the best next step for now. Turns out my insurance approved and they got it in so quickly I start my first 4 week round Wed. 6 Aug.

Now I’ve put in a date so I’d better get this post finished and up.

Here’s a scheme to think about. With the price of regular gas topping $4.30 gal and milk, at least in NY, hitting $4.37 gal any place we can save a few cents is looking good. So now I actually look at the Re in most of my spam and if FREE is there about 50% of the time I’ll open it. One of the things I opened recently was for Freebieforce. I watched the video and then Googled it, there were 25,000+ entries. I looked at 20 or so in the first few pages and found them about 95% positive. You join look through a host of free or money saving items and services. At $10.00 monthly membership , on just coffee, bagels or Burger King you can easily save twice that. Even better if you sign up and anyone signs up though you you get $1.00 per person. Well like I said free is free and saving is something I’m looking for so I signed up. I’ve decided not to send their letter to everyone on my mailing list and definitely not to buy any mailing lists or to buy into any of their training. What I have decided is to leave a link to FREEBIEFORCE here and also to use everyone who sends me spam as a mailing list. I’ll see what comes of it. In the meantime even a free box of Cheerios a week for the month saves me more then the $10.00 If free or coupon discounted merchandise or services interest you check it out.

Seems like only yesterday I was whining and complaining about not knowing what I’d actually managed to do or not do in the 6 months previous. And now I’m looking back on a month saying Wow “How did all that happen?” - where’d the time go!

Let’s see, first there’s Brooklyn’s birthday. (Yeah, I know, that happens every year, but this year I have no idea what he may want or what to get him.) Well hey, turn a light bulb on over my head - He said he’d like to figure out how to market MILK & CHASE merchandise and we’ve already made bowling shirts, I’ve got the logo files. We want to sell footage and stills for the business and there was a time when when I was doing some research on this stuff - what’d I do with that? Found it, I can set up a pro account at Photo Stock Plus for selling stills and products made from them. Then I can order M&C shirts and mugs from myself for his birthday and see what kind of a job they do on their products at the same time. (He liked them so much he had me set up files for the 4 main characters of M&C the comic and then he ordered a mug of each and a poster showing the 4 of them for himself, which he ended up hanging in the video control room at church.)

Army Dude finishes AIT and is coming home for 2 weeks of Hometown Recruiting before leaving for his first true duty station in Korea (Where he will probably not be coming home from for at least 6 months and definitely not be phoning as often from.) Only two weeks and he’ll be working and mom’ll be working and his brother’ll be working, but it’s over Easter so everyone’ll be around and together for at least one day. Well everyone was working, but we did manage some family time and some individual time with him and we did get the computer and third screen at Church working as correctly as possible in the time we had - After Easter pastor asked if we could put his notes up on the rear screen instead of the sermon outline we were putting up for the rest of the congregation on the front screens - of course the possibility of using multiple images on multiple screens was why they allowed the 3 projectors, screens and computer (specially built and programed by Army dude, Linux based with multiple video inputs and outputs) system we ended up installing. Naturally though, the original idea was to grow into the system and keep adding the new features over time AND that Army dude would either have already accomplished all the programing or be around to do it as Brooklyn and I got the wiring and video equipment in place to even send it all to the computer for distribution, let alone have the operators, much less trained operators to work it. Anyway, we just told pastor “sure, no problem.” Then the two of them went about figuring out how and making it work. Now pastor sends us the slides for the 2 services and a single slide of his notes and we set up the 4 slide presentations, 2 front and 2 rear. Some day we’ll get additional switching equipment and run the other video lines from the control room to the balcony for the projection computer, for now the projectionist just switches between front and rear slide presentations. Anyway, the boys said their goodbyes and mom and I got Army dude to the Airport (where, with no amount of moms pleading would they let “we’re his parents, he’s in the Army and going to Korea” us go to the gate with him.) and as far as security would allow to the gate. We’ve had a couple emails from him and he seems to be doing fine.

Let’s see Brooklyn’s birthday, Army dude finished AIT, was home for hometown recruiting and left for Korea, we got some work at church finished, I set up a still photography account to compliment our video stock account, we celebrated Easter with family, and Oh Yeah at the end of March mom retired. Everything had been piling up on mom for a while- She wasn’t happy at work, then they changed her job, son the younger wasn’t happy with college so he joined the Army (He did do the research and got a good deal and a contract guaranteeing the job he choose, but HE JOINED THE ARMY.) Son the older having graduated college and being hired where he had been interning and hating the 4 hour a day commute moved to Brooklyn, and then dad (me) goes and gets cancer so I guess yeah mom had allot on her plate, so we looked into and revised and revised and revised her retirement plans again and again and then she just decided this was it and did it. Mom’s still settling into getting used to being retired, but I think it’s difficult for her to understand I really do things most of the day most of the time. When I “retired” both boys were still in school and mom was working so I just continued going about things as usual except for going to “work” and then replaced that with working at setting up and growing a family business based on synergizing our complimentary talents and interests with what we were already doing at church. In other words putting together a business which allowed us to have to buy the equipment we needed to make the technology we were pushing the envelope at church with work. So I never had huge vacant time periods to deal with that mom now has. I only hope I’m smart enough to put aside time from some of the “stuff” I’m doing to really spend it with her now that we can. We’ve taken a couple days and gone to the beach and a couple parks where we’ve just walked around and taken some cameras so I’ve gotten some stills for Photo Stock Plus and footage for Brooklyn to edit for Shutterskock. And of course we’re going to Cape Cod for several days to visit an old friend, who just happened to be pastor at our old church. Also it’s like only a week after our 35th anniversary—-.

Admittedly just learning to do the web sites Army dude had been handling and working at growing the business much less adding a new large web site and dealing with the idea of having cancer has not been as easy as I thought it would. And while I Know GOD never allows us more than we can handle I don’t Believe that means we’ll always handle it as well as we could, so yeah it’s been a pain in the butt and that means I’ve undoubtedly been one also. With my platelet count stabilizing, the Dr’s been getting the Prednisone cut back further and further to the point where lately my count averages just about 100,000 and I’m only taking 2.5mg every other day, which has finally gotten me feeling almost the way I think I should - well at least I’m not exhausted all the time. So, even though it’s still watch & wait with the CLL for symptoms to show up and have to then consider what, when and how to do about it, it’s back to life as usual. (I hope.) Which unfortunately included catching up with and taking care of those mundane things like the bills I’ve never liked doing anyway and therefore found being tired a really good excuse for not keeping up with. Yeah, that didn’t work for long - you don’t pay them, they just send you more, you still don’t pay them they just start calling you and send you more till you do pay them. Anyhow with mom retiring it’s only right to start off with everything in order, so of course our newest and we thought best running vehicle decides to roll over and play dead - for keeps! It was replace the engine or the car and as the car was a ‘96 we decided to replace it. We found a ‘98 with only 64,000 miles on it, the price was right and mom liked it - so we bought it.

Looking back I am only now beginning to realize how much my nice, comfortable, easy to deal with, lazily mundane life changed after Friday 12 Oct 07 when the Dr. looked at me and said “I’m putting you in the hospital on a directed admission, we’ll call an ambulance to have you taken from here.” After going back and forth with the Dr. I drove home and called my wife at work to tell her “I’m home from the Dr’s. and waiting for the hospital to call that they have a room for me.” She knew I’d had had a cyst removed from my back and the Dr. had called me in for the third time in two weeks because he didn’t like some of my blood work after my routine visit. The surprise was what he didn’t like about it - a 50,000 then 20,000 then 9,000 platelet count and today my feet and lower legs showing petechiae. Hence the hospital visit by which point my platelet count was down to 6,000 so I ended up with a transfusion of 2 units of platelets, the start of 70 mg Prednisone daily and a cat scan.

I was released Saturday afternoon with a platelet count of 235,000 and an appointment with the Hematologist/Oncologist for a bone marrow biopsy on Monday along with a feeling of absolute exhaustion. The reasoning behind the BMB was to rule out causes for the platelet lose and stick a diagnosis of ITP on it. Needless to say it was more than a little disturbing when on Halloween the Dr. told us the BMB showed I have CLL (chronic lymphocytic leukemia), Leukemia, Cancer. “The good news is this a cancer you may well die with rather than from.” (While much of my subsequent research showed this statement to be technically true what it also showed was more than 50% of people who died with CLL died from complications of the CLL due to greatly lowered immune systems.) Truth be told the only part of my research I did like, or tell my family was that it was possible with CLL to go years without showing symptoms or needing any treatments - This fit in with my attitude of the only difference between the minute before I was told and the minute after was putting a name on something the Dr. was telling me I have. Of course while the Cat scan and a PET scan (eyes to thighs) did not reveal anything totally out whack for a 6o year old, the blood work did not come back with quite as good a prognostic story, it’s unmutated, ZAP-70 >30% and CD38 +.

By this point it’s late November and the Prednisone dosage is down to 30mg a day, but I’m not feeling any more alert and I was only getting things done by forcing myself to do them. By the beginning of January the dosage is down to 7.5mg. and I was starting to feel somewhat alert again, but also realizing I seem to have “lost” those three months - and of course now I’m trying to at least figure out just what I did or didn’t do during that period.

Some things I do know and am sure of; like going to church every week and working with Ted and the video crew and the sound people. I know we did the Worship Summit because there were problems getting the satellite dish installed, in fact we only got it installed and a signal up with less then 2 minutes to spare thanks to a call to Ted at work in NYC. The summit was really good and we’ve even been working on incorporating some of the ideas we saw in our own program. I’m sure Army Dude was home for Thanksgiving, cause he arrived 6PM Thanksgiving day and we had to buy Chinese food the day before ( No Chinese restaurants open on Thanksgiving, and that’s what he asked for.) I think we bought enough to feed the whole army, Gram and Ted reheated it all while Mom and I picked the Dude up at LaGuadia Airport. And then we spent about half his leave time at church mounting the third projector in the ceiling of the sanctuary. I did not keep up drawing Ted’s comic, but he took over and has been doing quite well with it. When Ted put the comic on the Web Comic page he asked for a logo and gave me a sketch of what he’d like. I remember it seemed to take forever creating a font and glass of milk to look good and still fit the specified 80X80 pixels. Of course he then wanted a desk top and bowling shirts utilizing the logo - I dare say both came out well. Oh, yeah we joined a bowling league, bowl every other week with the Sayville United Methodist Church. Somehow I managed to bring in 2 new web sites for design and hosting- one extensive and the other real basic. December 1 Ted moved to Brooklyn, 3 wagon loads over 2 days, a nice apartment near the Verrazanno Bridge. We did a 3 camera shoot of the West Islip Winter Concert, with one of the young people from church as a cameraman/grip. We did a live edit DVD of the BCS Christmas Pageant. Army Dude was home again for Christmas and we had a home cooked Christmas Dinner (Prime Ribs) for the first time in years and that was really good. The rest of those 3 months is pretty much a blank - I know I moved my blog from within my website to here, it’s dated. I know I went for blood work every week, I have copies of the results. I know I paid the bills, but it seems never on time cause I was always getting calls from them wanting their money . I know I was working on a number of things regarding affiliates with and for our web sites - but I still haven’t figured out quite what, I have go through a bunch of notes I can hardly read and the tutorials I bookmarked in my browser to reacquaint myself with where I may have been heading.

By Mid January I knew I was playing catch up with myself and my life and thought a good way to start trying to figure out what had and was happening would be to start setting it down here where; first and most important to me is I should not be able to lose it and secondly maybe someday someone already having been there saying “you’re not alone” or someone else finding themselves where I was just short months ago would discover they are not alone. A result of my second new posting was an invitation;

I too am a CLLer. Currently undergoing my second treatment FCR. …..Sure would like to see you join us at CLL Christian Friends if you are in a mind to. I am an Admin there and we have a great support site. …… Take care and God Bless, Loren aka BaldEagle

By 1 Feb 08 I had visited the site several times and realized it was time to commit and join this family of Christians brought together by CLL to care for and about one another through prayer and understanding, being there for one another especially through the hard times, but also each sharing and truly applauding the triumphs of each other. The shear warmth and sincerity of welcome was exhilarating and I dare say somewhat daunting, especially as I as yet have no obvious symptoms other than being so easily tired and that both my sons say is because “you’re old!” I was speedily put at ease by these wonderful people who all reminded no matter how I may feel now, the simple fact is I have CLL and while they wish my status will remain as it forever the fact is it could change at any moment. As for now I thank GOD that life is good.

For those of us who seldom look at the comments- In response to the next installment Ted commented

“Let’s see your outlook after you handle a shoot at church all by yourself. I agree, it’s progress, and that’s all great, but I fear we are backsliding, and we may not be able to regain the lost momentum.

Then again, this is a marathon,. not a sprint, so we don’t want to burn ourselves out. We’ll make it work, from week to week as long as we can.

Might not be pretty, but that’s what M&C.com is for … You just say “We did it!”

Well Ted, you certainly have me posting more often as your comments require complete answers, especially as they give me the topics and the internet gives me the soapbox. First things first though - Enrgeeman thanks for adding me to your blog roll, hopefully by the time you get home next week you’ll have that new computer working the way you want.

Okay, now Wednesday for those who don’t know is “blood day” my weekly blood work to see if I still have sufficient platelets and if possible (or necessary) change my daily dosage of Prednisone. Today I also saw the Dr. she told us because my platelets have been over 100,000 for the last four weeks I can now start coming in every other week, but we’ll keep to the 2.5mg Prednisone to try to keep the count up and because it might help keep the CLL in check. She also told mom I’m not “sick” or fragile, I just have to be careful and watch for symptoms of the CLL. That was the great news, the bad news was after lunch we went to see about the Merc. unless they find a good used engine for it - it’s done. It’s allot worse than just an oil pump, give them a couple days to check on engines, but be ready to buy another vehicle.

Then comes the Lenten Service at church and almost your wish for me “to handle a shoot at church by” myself. Now remember you’re in your early twenties and I’m well, 60 and, not as fast as I used to be. Mom and I got to church just before 7:00 PM, service starts 7:30 PM, I have the Special Edition DVD for Ida and a quote for the electric for Judy to deliver also. As we arrive we meet Mrs. Matlack who asks if I know where her wreaths were moved to (they had been in the outer room of the loft) I told her no but I’d go with her to check the loft as she did not have a key- sure enough someone had moved them in there. I checked with pastor to see if they would need more than the 1 lav. he told me they would need a second one. I arranged with him for pastor Moore, the guest, to use lav. 1 and he would use lav. 3, which I handed him with the batteries. As I was headed up to open the sound board, which I had turned on at the modesty rail I ran into Vuman who asked if there was anything he could do to help with video. I silently said “thanks Lord” and immediately told him YES! lets go down to Atlantis and get things turned on. Josh reminded me you had already shown him everything down there including how to use the Grizzly so I left him to turn things on and set himself up to do the whole video, while I went up and put the batteries in the GL1’s. (I had only planned on running the middle camera wide as a 1 camera shoot for the night , while I would be on the sound board.) When I got back to check Josh had everything turned on and set up except for the switcher, so we turned that on and he was ready to go. We went over when to start and stop the recorders and I headed for the balcony and the soundboard as the choir and pastors entered the sanctuary. With pastor at the lectern and giving the welcome I noticed I’m getting no signal from lav. 3, which he’s wearing and should be working. As pastor announces the greeting I run down from the balcony and up the aisle up to the front of the sanctuary to check his transmitter, its on and the mute is off I tell I’m getting no signal so forget it for communion and speak louder. I had also noticed I was getting no signal from lav. 1 but when pastor Moore had put that one on I had a signal so I hoped he had muted it or he wasn’t going to leave the pulpit. He had and he didn’t. Sound for the rest of the service was okay, for pastor at communion I brought up the pulpit and lectern mics and actually managed put him through the system that way. When the service was over and I was heading down to see how Vuman had made out Laurie asked me if we were ready for Friday’s movie night and did I want the movie now because she would not be there Friday, so I got the movie from her and then headed down to Atlantis. Josh was no longer there, but he had finalized the both DVDs and turned everything off. I collected up the batteries from the GL1’s, the lavs and put lav 3 back in the balcony, locked up the soundboard and met mom in Fellowship hall for coffee.

Now I grant we had rewired Fellowship Hall Sunday for Friday’s movie night so I did not have to set up for the simulcast, and I did not put out the DVDs of prior services. Nor did I turn on the balcony computer and projectors. I did not use the projectors because we had no slide presentation and I did not want put up sides on 1 front screen and the rear screen and leave the other front screen blank, if I had had the time to possibly get both front projectors images I would have left both of those on with a single slide, but I just did not want to use one and not the other.

Oh, as the Vus were leaving Josh’s friend Chris made arrangements to meet Sunday morning to work with the Video team on the 9:00 AM service before going to his own church and being an usher. I call this good and progress, not backsliding.

You did say you realize this is a marathon and not a sprint. Let me remind you though, the original marathon man on reaching Athens and delivering his message of victory - dropped dead. I humbly submit to you these times of “backsliding” are truthfully resting periods for us to revision the goal, make necessary course adjustments and continue with a new vigor and enthusiasm which will instill that vision in others who will continue the journey when we’re no longer there, because my friend this is a never ending mission.

Just reread yesterday’s entry and realize I am doing this to remind myself of who I really think I am, so I can keep moving ahead with my family, life, business, and whatever else God allows me to deal with or has for me to accomplish. I certainly know that for about 2 months I absolutely felt like doing nothing and was tired all the time, no matter how much I slept and I don’t believe simply putting a name on a condition I have made me that way, I do think the 70 mg of Prednisone a day had allot to do with it. As the dosage was lowered, while the platelet count was (is) coming back down (the Dr. says 70 - 80,000 would be acceptable) I have started to feel more like doing things, but even that only seems to last for an hour or so as I’m working on anything before I’m tired again. (Reminds me I have to ask Dr. if 20% of platelets are bad do they still count in the lower limit acceptable for the blood count.)

Anyway 2 months of walking around dead on my feet trying to keep doing everything that needed to be done and not telling anyone we didn’t have to (other then Pastor, a few close friends and and as few people I have to work with as possible) certainly left a mess of all the normal things like paying the bills, raking the leaves and assorted other things associated with home ownership. Then the last couple months of feeling like getting things caught up, but being tired after an hour or so of working at them just barely kept me even with as far behind as I’d gotten. Oh yeah, in with all this was fitting in those extra Dr. visits for blood work every week and those scans and results of them and all.

As of this week my count is at 100,000 and I’m on 2.5 mg prednisone daily along with all the other stuff I’d been taking all along with one added dose of Metformin a day for the diabetes control. And I think I can / should look back and take inventory of what I have and have not accomplished - more on that next time.

While the title is a mouthful, it really about says it all in covering my last 4 months.

It all started back in the first week of October when I saw my Dr. for a routine 3 month checkup. The Blood work that visit and then from an in office cyst removal ( the next Monday) showed a “sudden” drop in platelets to about 50,000. Blood taken on follow up visit 3 days later show a drop to below 30,000 and got me a call to come back in. Just looking at me Doc. said he was admitting me to the Hospital. Platelet count at hospital was below 7,000 - received transfusion of 2 units platelets and was started on 70 mgr Prednisone a day. The following day after a Cat Scan I was released with a platelet count of 235,000. The next Monday (October 18) I had bone marrow taken for a biopsy, which rather then show the cause of the low platelet counts showed that I have “Chronic Lymphocytic Leukemia/Small Lymphocytic Lymphoma (est 20%)”. Of course I was given this news at my next visit with the Dr. at the Oncology group October 31.

I know I’m getting tired, I just read over this and I’m asking myself why am I writing this? And I guess I hope its mostly to get things straight in my own head. But also because, although I’ve done allot of reading on CLL I really haven’t found anything of practical use as to what to expect as time goes on and maybe someone out there can give me that information. Or possibly there’s someone like myself just looking for what’s ahead and reading this will put at least 2 of us in the same boat. Anyway I am tired and need to get some sleep, I’ll think on it and be back later - tomorrow not 3 months from now.