The Hall & Cabides Family

                Today is a day and time I just want to talk to you about what is or has been on my mind for a while.   I guess it s what psychologists would call being in my reflective period of something like that.   I guess that is something I have to do because that’s what we do these days; classify things.   There is no such thing as “normal” anymore.   Everything we do, think, or say now classifies us into some group with tendencies and probability trends so we can take a pill to stop or change us into something that doesn’t exist anymore; NORMAL.

                So if you have nothing to do before your next “normal” pill, follow along.   If you are not interested, don’t.  As we say in the Philippines “Bahala ka” and that means “it is up to you.  

                I remember in my earlier days, when every second of every day was critical to accomplish something, I kept dreaming of a day and time in my later years when the world would finally slow down and everything would be in the right place.   Life would be simple and every day I would wake up and it would be like a yearlong holiday.

                There was a seemingly mythical word we all seemed to say we were working toward that was full of 24x7x365 days of nothing but happiness and joy.  That word was called “retirement”.   But a funny thing happened along the way to “Retirement”.   I guess this is a big part of what this reflectiveness was all about.  See, in a backwards sort of way, I reached “Retirement” thru cancer.   I have found that there are a few differences in it than I expected it to be.

                I do not know if it was the same for you as it was for me, but my parents and elder aunts and uncles never really talked much about retirement.   I never really noticed that when I was younger or it could be I never wanted to hear about anything that was negative about “Retirement” when I was younger.   Honestly right now I do not know which one of those answers is more true.  But now, I will talk about it more for the benefit of the young because we people (baby boomers) who have reached it are living it right now. Well most of us and the others are clinging to the work world.  

                Retirement is something that is an extension of who you were in your working life.   I know that sounds like a tired cliché but it is much truer than you think.   I also found that it models your personality type and matching your personality type with how you spend your retired days plays a big key to whether it is a positive or negative experience.   Yeah, that was a lot to digest but of course you know I am going to explain it.

                One thing I had reverted back to doing when I was in a very deep concern about would I survive the cancer I had was to go back and do something I use to do when I was a child, but in a slightly different fashion.  I use to write myself letters, seal them, and open and read three months later.   As a child it helped me see and understand who the Hell this Michael Alan Hall character was.   Well, fearing that I would not survive my cancer (yes early on it really was that bad), I decided to begin writing my autobiography so it could be preserved and given to my new daughter Ellamaria when she got something like 16 or 18 so she could hear from me who I was and not from other people who didn’t know or understand what I stood for.   Actually let me be more honest with you a little.

                I started writing my autobiography well before I went into the hospital because I was having some very bad symptoms occurring and knew I was much more sick than I would let on to anyone.   Let’s just say the symptoms were bad enough that I knew I would not live much longer than a year or so.   Dr. Kumar and Arlena were the only ones I told about them but I do not think my explanations really got thru and told Arlena what was really happening to me.   These were all during the pre-apartment period.   I got up to about 50 pages of small type and stopped because the here and now gave me more pressing things to handle. 

                The past few weeks have given me more solitaire time and I am not up to about page 75 and have redone some of the earlier parts.   I now also write this because I know even now my memory is not what it use to be. I even have trouble remembering my own cell phone number which hasn’t changed in many years.   So it is even more important I write my past because a great number of those things will be lost with me when I pass.  This is the only way I can preserve who I was in future years when only dust exists. 

                I really urge everyone to spend about 30-60 minutes a day writing about who they were and how they thought and how they made decisions.   This I feel is a precious gift you can give your kids and other people to remember you by, but more importantly than that the things you will really learn about yourself will more than surprise you many times over.   All I can say is we are not who we really think we are and the message we are giving others is not what we think it is.   And this fact is coming from a person who preached and lived self awareness all his life.

                Anyway, sorry, I got to that tangent because I was about to talk about knowing your personality type and matching it before you are retired.   What I mean by types is your real personality type.  Not just the one you think you know, but is the real you.  When I think back to something I always told my children even before I became and Anthony Robbins coach is that if you really want to improve who you are and where your life is heading, then surround yourself with friends that are doing what you are trying to do.   In putting it another way, you are who you hang out with.   If you hang around with deadbeats, that’s what you are and that’s what you will become.   If you hang out with nerds, that’s who you are.   If you hang out with sophisticated go getters, that what you are.   I teach that and I firmly believe in that.  It wi what got me professional success when I was working at GEIS.

                What I didn’t notice back then was with men, I also was type fitted with another type.  It took my autobiography to make me see this clearly now.   I do not expect women to understand this, but certain men will.   I was an extremely devoted family man.   My family to me is my highest priority and my commitment with that I do for them cannot or will not be sacrificed.   Even my choice of mentors reflects this type.  

                I was closely related to men like Matt Mulligan, Mike Yourtee, Milt Higgins, Tom Popdan, Leo Schneider, Don Ivey, Mike Gwinn, John Samuels, Hanico Periria (sp), Jim Hines, Lee Denny, and a few more I cannot even remember their names.   Even today I add Dr. Kumar, Rod Hart, and Bob Costello to this list of men.   We had more in common than just working at GEIS.  During that time most of us had families and we all respected and help women in high regard.   What I didn’t realize for me is that meant retirement was to be with family or a giving and loving wife if the kids were gone.

                On July 5^th, I began experiencing retirement solo.   This for me is not retirement but is more like a living hell.   My only reassurance is that this is temporary.   Maybe I could have adjusted to being solo if that is how my life twisted and turned, but for me being married with a wife and children have always been important.   It was actually one of my early dreams of what being successful in life meant because my mother and father divorced and I remember hearing in some of their arguments that if I hadn’t been born when I did they might not have every married.    So because of my autobiography, I know why being in a family is important to me. 

                There is another part of this reflection I will write about in another letter.  This deals with a discovery and what I will say will be a belated thank you to a person I learned a lot from about battling for yourself.   Yes I know Mike (Yourtee) taught me a lot there, but there is another person I learned a lot from that I never have thanked and as I look back in my professional career I feel somewhat badly I was not there to do more for her than I did.   It is what I learned from her that helped me in my battles in both V-one Corporation and Docucorp International.    So as a prelude to my next writing, let me just say Thank You Sharon Sandstrom.

Folks

                Ok, this one I will send out as an email as well as a blog.   For those who do not check the blog I put one there Monday evening which explains the meetings I had Monday with Social Services, Social Security, and how I got sick at Shady Grove (and pissed as well).   Each of those is actually the beginning of the statuses in here.

                I guess when I put this on the blog I will title it “I WIN”.  Well at least of the three things I mentioned in the prior paragraph, 2 of them I have registered what I will call a win.   Now, which one do you think was not the win?   You will be surprised about the answer.

                Let’s start with the Shady Grove incident.   After all the crap that happened there, by the time I got home I was really ill.  It was to the point that my temperature was around 99.7 and I knew if I hit 100 that meant I would be back in the hospital.

                The problem here is that of late I have been battling a depression of loneliness because of my loss of Arlena and Ellamaria.   While being lonely while in the apartment is bad, being lonely and being in the hospital is worse.   So I really do push it to the end about contacting the doctor because I do not want to go back there any more than I have to.

                Tuesday was my biggest battle with illness.   I was so weak that I could not get out of the bed Tuesday.  That even included eating or taking medications.   I couldn’t even reach my cell phone.  I did not far from seem like I was dead.   It was a day I really wished Arlena was here.

                About 3am I had energy enough to make it to the refrigerator and put a piece of lunch meat between 2 slices of bread.   That was about all I could do before I laid back down.   No I didn’t sleep but just thought and at least turn on the laptop.  I knew Monday at Shady Grove was why I was sick but still not over 100 so I could deal with it myself.

                Wednesday I went over Vicky’s house and worked on her pc’s and met Desere.   If you think I have computers!!!!!   Vicky has 9 laptops, one desktop, and several printers.  On this day I worked on 7 laptops and that took close to 10 hours.   When I got home I basically just fell asleep because I knew I had a 10am appointment with Social Services Thursday.

                So now we start transitioning to Social Services.   When I left in the morning I was really feeling like saying the hell with it and go back to bed.  I still had a slight temperature, I was much weaker physically than usual, and I also had an upset stomach.   You know the kind that says if you move too much or quickly you will visit the ceramic thrown room ASAP.

                I was called back about 10:18 and walking extremely slow and feeling much worse.   The lady said you have been here before, was it about the same issue?   I said no that was closed; this is a new one that needs to be addressed.   Then she hit me below the belt by saying “since you worked with Ms.  Xxx before you will have to work with her again because she is familiar with your case and history.

                Oh no, not miss “I don’t come to work” again?   I said “that decision concerns me because ….” And I basically explained I had everything in and because of her missing in action it was about 3-4 weeks of inactivity on her part.  She asked well did Mr. yyy her manager know? And I answered yes and he was the one who closed the case because 30 days expired, but the funny thing was all 30 days were due to Social Services inactivity.  She looked socked and said Oh My.

                She apologetically said “well we have to reassign it to her because she has to learn.  I told her I understood but really didn’t like it.  She then told me that Ms xxx would not be I for another 1 ½ hours and took the option to wait rather than come back Friday.  So I went back to the waiting room and waited.

                Another lady came out alter and called me.   She said that Ms. Xxx was not in so she would talk to me a little.   When I am not well, I am more direct and to the point with my conversation.

                I explained that I had again worked out a solution with the apartment people and showed her how much was owed ($1,247+).  I told her that the change was I now had Social Security disability and the only help I wanted from Social Services was $750 by October 12^th and I would cover the rest.  I emphasized that once more that it was all I wanted from them.

                She went back and met and talked with the manager.  She came back about 15 minutes later and said my plan was approved and that they would pay the whole amount and I would receive a check today!!!!   I was shocked.  Apparently no-one, even the manager wants to deal with me.  Instead of paying me the amount the manager told me the last time they could pay at the most (750), they decided to pay (1,200+) so they could get rid of me.   Wow, I won against Social Services.  I am apparently a bigger pain in the ass to them than they were to me.

                Regarding Social Security, when I got home Wednesday from working over Vicky’s I had a letter from them.   What it said was that on October 25^th I will get a call from them at 9am on 240 912 4407 regarding Ellamaria and this is considered my appointment with them.  So guess where I will be on October 25^th come hell or high water????   I will have all my paperwork with me because this is probably the make or break about getting funding for Ellamaria.

                So which one did I lose of the 3?   It was the illness.  Even after leaving Social Services before catching the bus to residential services to give them their checks, I found some bushes to throw up.   I am still sick as a dog and yes my temperature has risen and gone down since I lost some weight in the bushes, I am feeling a lot better about October 12^th, because I feel I am $750 richer for making the effort and pushing forward even though I was sick and wanted to rest.

                This just shows you the difference between making the effort and not, because I bet if I had cancelled they never would have paid the 750 much less the full amount.   I WIN.

Folks,

                Ok, it has been a while since I have made an entry to this blog, but that because being on remission and health relatively holding up there has not been much to report.  With my first Oncology review on November 24^th the only things to update are the other things that affect cancer patients like financials and dealing with organizations to try and recreate your life.

                I reported to a number of my key caregivers that I needed to meet with Social Services (Monday) and Social Security (Tuesday).  To share with readers why I think is important if you are reading these because you are looking at a path to follow for your cancer experience so let me give you a brief background and then tell you of a sad issue about how our society ignores impaired people.  For those who wish to skip parts, this will be closer to the bottom of this entry.

                Social Services has been the most poorly run inconsiderate group of people I have dealt with in this complete experience.   In summary I have been dealing with then since February when I got out of the hospital and in 9 months have only gotten Food Stamps and that was after over a month late from when I was suppose to have it and “I” found and error in their database causing the problem.  If you want all the other errors I have caught they have made that is used to deny service contact me and I will give them to you. 

                The last time I went to Social Services was because I got and eviction notice because I was behind in my apartment rent.  I had spoken to the apartment people and worked out a deal on payment and went to Social Services for their help.  Remember at this time in I had been out of work since January (7 months) and had no income and waiting for Social Security disability.

                Social Services in their “Emergency Eviction Services” employs “part-time” (20 hours a week) case workers that do not tell you this during the interview.  I had every stitch of paperwork during the initial interview (I was a Quality Assurance Manager in the past) and had a contract with Social Services signed on day 1.  After not hearing back after the initial interview (which included providing an audit letter from the apartment accountant as to what exactly was owed and their contact information), I called back for a status update after a week.   On the caseworkers voice mail this is when I heard this was a part-time employee and if I had an emergency call this other number.  Calling both number for over a week got no return call so I went back to Social Services.   For those who do not know me, I am debilitated and have to use a walker to move around and take public transportation so getting to their office is a major undertaking and coupled with I have no income even the cost of bus fare is major to me.

                Now 15 days into this contract while I was there I find my case worker is there and I leave a message I will wait in their waiting room for them and also find out who their manager is and get his number.  I meet with my case jovial case worker and find they have done almost nothing on my case leading me to believe they finally called my apartment only because I was there that day. 

                When we spoke, the person had never reviewed any of the information I gave during the initial interview 15 days ago because they were misquoting everything I provided.  When I asked of the conversation to my apartment and pointed out the letter I provided to the accountant, the reply was “that was not who I called”!!

                After I got home, I called and spoke to their manager and his excuse for the 15 days of no activity was my case worker had been out ill and only worked 4 hours since the day we met (how fortunate for me to come in on those 4 hours).  When I asked with them being out so long did another case worker take over her cases and he said he was thinking about doing that.  It struck me as odd that this was an emergency services organization mode of operation?

                He pulled my case and promised something would be done and if I heard nothing in a week call him.  Another week went by with me calling and no reply and I called the manager back and his excuse this time was that this part-time case worker was having car trouble and he would finally have someone else look into my case.  We are now over 3 weeks into my case for “Emergency Eviction Protection” and I have been waiting on Social Services the whole time.  Considering I had worked out a deal before coming to them and told them of this I was a little confused.

                After several days I got a call from the new case worker while I was in the hospital with another major operation, but I called the manager and let him know where I was.  He never communicated this with the new case worker.   When I got out I returned this person’s call and got into an argument with the subject being my answer to a question she asked.  Her question was why my wife was not working.

                As I started answering her question my first comment was that she was breast feeding our 13 month old and before I got to my second reason, her under the breath comment so I could hear was “I worked when I was breast feeding so what is her problem”.  This comment pissed me off because at the beginning of our conversation I told her I was a cancer patient and explained my chemotherapy had me in the hospital every other week for 3-5 days and then I was home recovering from the drugs.  We terminated the phone call after this argument because she told me to come back to their office.

                So even in recovery from a bowel obstruction surgery I came on the bus to their office and met with the manager.  I first explained the argument and that my wife was also caring for me in cancer recovery as well as the baby.  His reply was two things.  One being had I searched for an at home nurse to come care for me; which I thought that was a ridiculous answer.   The second thing he told me was that Social service was closing my case because an emergency case could be open only 30 days and I was at 30 days.   In this situation the 30 days was all Social Services inactivity from their “part-time” employee not showing up for work!!

                So I had to figure out how to avoid eviction on my own.  Social Service was no help and in fact was more a detractor in the whole process.

                So this Monday I was back now looking for help with a September eviction notice but this time I now have Social Security disability payments, so I need some assistance in the beginning only.  After being in the social Services office for an hour this morning and seeing an intake person, she tells me no case workers are in this day and I can reschedule for a day when they are (which is 3 days later).  I mention that she is aware this is to prevent an eviction which is an emergency.   She acknowledges this but says that case workers will not be in until the day she said.  She offers I can come in on an earlier day and maybe one will be in then.  I accept the appointment date and leave.   I am again miffed with the name of “emergency” with this organization because it seems their working hours and commitment to people under the stress of an eviction is really not anything critical, so why is it called an emergency service and staffed with “part-time” workers who are not challenged to come to work during their time.   This is a job even I can handle with my disability!!!   So this adventure is open until my next visit.  Stay tuned!!!

                I ran into my step daughter who was there with an exbrother-in-law.  Because it was still early in the morning and they were going to Rockville he gave me a ride to social security.

                Social Security I honestly have no complaints about the people I have dealt with.  They have been extremely courteous and very helpful.  What has been their issue is how the processes they work under affect people.

                What I mean by this is to qualify for disability you have to be out of work for 6 months.   If you have a working spouse or maybe in a company with time available this may be ok.   However if you are the bread winner and an independent contractor, you have a major problem.   With no income you have to either borrow, or use up any pension or IRA, or lifetime savings you accumulated over your working life to survive.  Oh yea, by the way, any of the above will negate you getting any services from SSI or Social Services!   In short you have to be completely out of any money or assets before you can get help.  This means you have to basically become homeless if you are independent to have a chance to qualify for assistance.  The average failure rate of Social Security disability qualification in the USA for first time appliers is between 30-33% (and we wonder why homelessness is growing?).

                I was fortunate because I was one in that 30-33% group.  However, when I was qualified they only qualified me.   As I understand the Social security disability, because I have an infant child she is also suppose to receive a check as well.  In speaking to the SSDI people, they indicated they were only case workers to determine whether I was disabled and I needed to go to my local Social Security office and put in a claim for my daughter.

                This was what Tuesday’s visit there would be but because I could get a ride and save some bus fare I decided to go there today.   The only negative at the Social Security office in Rockville is they have a large amount of patients there so getting to meet with a person usually takes a while.  So it is more like going to DMV on a busy day.

                I waited maybe almost 2 hours before seeing someone, but again he person was efficient friendly and helpful.   She reviewed the paperwork I brought and told me I needed to speak with a case worker but there was none there today.

                Now, here is a big difference on how the Social Security intake person differs from the Social Services intake person I met with earlier.

                The Social Security person looked at all the things the case worker would have to physically review and see.  She took that information down and in her computer verified the information.  Then she set me up for a phone interview to be completed with the case worker so I would not have to return to their office because I was disabled and traveling would be an inconvenience to me.  She told me I would receive a letter in the mail letting me know the date and time of the phone interview.   I viewed this as a very good customer service technique.  She gave me the option of either coming to their office or completing it via the phone.

                As you can see there is a major difference with how the two different organizations are run and I presumed managed.  Social Security seems to employ professional quality people and I would have to assume are managed so.   Social Services hire part-time workers with part-time attitudes.  They are not professional workers and the manager is not very professional either.   I had been a manager for about 15 years and can see the difference.

                My day was not over after leaving social Security.  The temperature was in the low 40’s and it was raining.  If you have ever had neuropathy, you know what that means to your body.   You are almost allergic to cold and wet and cold creates a great deal more pain where you are numb.   In my case that means fingers and hands (yes it has spread to my hands as well.   Also it means my toes, feet, ankles, and calf’s (yes it has spread that far also).

                My smartcard (used to pay bus fares) had run out so since this bus stopped at a metro station I could go there and since I had about 6 dollars I could put this on my card so I could get to Social Services later that week.

                The bus got to the shady Grove Metro Station.   This station has two levels with the bus off Rockville pike on the upper level and the metro machines on the lower level.   I went to the elevator but it was fenced off and out of service.  The booth with the Metro person is below and there is no phone to contact them from the upper level.   There is an escalator there but it only goes up.  The only way down is either to have the escalator reversed which this person has a key and can do or walk down 2 flights of wet small marble slippery stairs, which I cannot do carrying a walker as well down these stairs.

                The bus has now left before I find all this out and my metro card is empty and with all this it is raining outside.  When you have a walker you cannot hold an umbrella so you just get wet.   So I am standing at the top of these staid standing in the rain asking people walking by for help getting my walker down the stairs.

                After about 20 minutes of this an elderly gentleman comes by and sees the elevator is out of service.   He offers me a ride to the other side of the metro where you enter by the lower level entrance.   I go to the metro booth and let the person know about no way to contact them because if a person with a wheelchair comes there they will have a bigger problem than me.   His response?   He said a person can take several buses and come thru one that comes down to the lower entrance or they could walk around the metro to the lower level.  This walk would be a marvel because there is no walkway for this and I would imagine it is nearly a mile or more walk to do this.  Maybe a health nut would enjoy this but on a cold rainy day an impaired person would never be able to accomplish this.   By the time I got home I was exhausted and sick and just fell asleep.  Right now I am fighting off a low grade fever hoping it does not get to 100 or I have to go to the hospital.   This is one day in the life of a cancer recovery person some ups and some downs but a challenge a lot different than when I was a normal person.

Folks,

                Ok, here is how everything goes and stands.  I called my SSDI case worker today to beg, yes beg to her to push everything as fast as she can.  She explained the process to me.  She said the following:

                The doctor has up to 2 weeks to get his report or findings sent back to SSDI.  She checked and said they have not received them, but I didn’t expect them back yet.   After they receive them in her office (Towson), they will forward them to the doctors (Timonium) where they will review and contact me.   So basically I have 2-3 weeks to wait to hear anything.

                This basically puts everything until the first week of October when everything is due to be shut off anyway.  Kia has provided me a stay of execution on the apartment rent.  Since Social Services did absolutely nothing except waste 30 days and said they would not help, Kia loaned me the money to pay the late July and August bill so I can remain in the apartment until SSDI give me their decision.

                Based on what they say, I will know to ask Sprint, Comcast, vitra (water), and any other essential bill collector to give me and extension for their cutoff and offer payment in full of their invoice.   If they say no to SSDI, I will be talking to Janeen and KC about moving to their place in Baltimore then go after some SSDI lawyers to continue my battle to get SSDI.

                Let me take this opportunity first to say that working with my SSDI case manager has been a dream.  She has in no way done anything to not help.  She has been courteous and kind and helpful.   She has been everything Social Services have not been.   My issue with Social Security has been their rules and slowness, not with the people providing the service.

                My case worker and I even talked about my mother who use to be the Deputy Director of Social Security.  Man, if she were alive now, I bet I would have had SSDI months ago.

                So what did the doctors say?  The neurologist on Monday was the wilder of the two because first of all, I nearly blew the whole thing up.   Al I can say is “CANCER BRAIN” strikes again.    Some of you will know what I mean.

                When I got the first appointment letter and read it, most f you remember I said “Wow, same building and floor as my Oncologist, Surgeon, and Cancer Navigator”.  That was cancer brain reading the letter.   Because I always try to get to an appointment early, when I arrived and tried to find suite 260; I noticed the floor only went to suite 233.  Ok I was confused at that time.   I pulled out my appointment letter and then finally read it was at 14955 Shady Grove Road, not 9715 Medical Center Drive.

                As my heart sank to what’s left of my stomach, I realized I had a big problem.   The problem was all the warning letters saying do not miss this or SSDI will be stopped.   The appointment was at 1:30pm and it was 12:50 and I had no idea where the hell the building was.   Furthermore, I am on a walker, do not have a car, ran out of money 2 month ago for a cab.  You can basically say I was feeling like I was in a crap filled toilet and someone just flushed!!!!

                I rolled out to the bus stop as fast as I could on Medical Center Drive where I knew the 43 went down Shady Grove (and my smartcard) would get me a ride on the bus.   Tick tick tick no darn bus.   Tick tick tick it was now about 7 after 1pm and I was stressing badly.  This called for desperate measures.   I began hailing down any car passing by.  In my pocket I had 2 one dollar bills and a pocket of change maybe close to $1.50 at the most.

                No car would stop.   A cab came by and I flagged them.  It was a Mexican female driver (that did surprise me but I was desperate).  I told her all I had was about $3.59 and needed to get to 14955 Shady Grove road.  She thought about it for a minute then got out and threw my walker in her trunk.   We drove up and down shady grove and she couldn’t find the building.  At 1:24pm she suddenly said, I know where this building is and drove me to the front door.  I walked into the doctor’s office at 1:30pm on the nose.  I was a stressed out nervous wreck when I arrived.   My normally calm mannerism was shot and I was exhausted and shaking.

                The doctor took his time and had me sit in the examining room for maybe 15 minutes before he came in and I was almost sleep when he reentered.   I had dreamed of being hooked up to tons of electrodes so they could measure the nerve pulses and pain and things like that, but this exam were far different than I had thought.

                He asked me several questions about neuropathy and he did not care about the hands only the feet.  He had me stand and pat my feet on the floor one at a time.  I noticed the right was easier and faster than the left.  Then I lay on his bed and he took a tuning fork, rang it and asked me to identify when I felt it.   He started on the bottom of the foot and went up to the knee on both legs.   On both I only felt it when he got to the knee.  He got something cold and did the same and both I felt when he got to the knee.

                Then he had me stand and pat my feet again.  He asked if I could walk to the door on my toes.  It was maybe about 3 feet away if that far and I reached out to him and he moved away and I asked…oh without help?  I leaned to get on my toes and two things happened.  First it hurt like hell to do that and second I fell to the floor before I could even take 1 step.   He kinda helped me up and asked if I could walk on my heals.   I looked at him and started to rock back and he put his arm behind me and caught me.   Then he had me put my feet together and asked if that hurt and it didn’t.  He had me close my eyes and stand and I wobbled all over the place.  My balance is not good when I close my eyes.  He next moved my walker out of the room and asked if I could walk to it.   Taking very small and slow baby steps I made it.

                He then lead me to the front desk and asked if I was taking any neuropathy medication and I said my PCP and I discussed that and he said it wouldn’t help and I said it was something that started with a “n” and he said nuronton and I said yep.  He asked if I had seen a neurologist before and I said no because I was an independent contractor and had no medical insurance.

                When we got to the front he said I will send a letter and he disappeared.   I asked was that it and the receptionist said yes.   I didn’t even get a chance to ask him questions!!!

                The next day I was the first appointment to see my surgeon.   He has dome both the January and August surgery on me, so we are very familiar with each other.  My appointment was 9:30am his first of the day.  I got there maybe 9:15 and waited about 4 minutes in his waiting room before being escorted to the exam room.   He and a newbie came in and I said was ok for the intern.

                This was the most comical exam I have been to but that is how I and this doctor are.  He started by saying that they have not received the paperwork from the hospital about this surgery.  So he said what did I operate on you for.  I said I have no idea but this is what they put on my wrist and showed him.   He said oh yeah a bowel obstruction.  He said do you remember what day and I said the 27^th.  I only remember because the ravens were playing the redskins and I told him I didn’t want to miss the game.  He said any problems and I said no.  Then he told me if you get any of these symptoms you call me and I said ok.   Then that was it.  I was out his office before 9:30!!!

                After that I met Kia and Stef for lunch and the over to the rental office to pay with Kia’s help.  Thursday I have a meeting with my PCP dr. Kumar.   I assume this will be a two week checkup and I will clean his pc’s while I am there so I may not give a report if nothing significant is discussed.

                After the Thursday appointment, my next one with Dr. Bannen is not scheduled until November 24^th.   At the All-Cancer meeting Monday one of the Melanoma cancer patients who had bad neuropathy said he took vitamin B6 and that gave him great relief and cleared it up.  I called Dr. Bannen’s office and asked if it was ok for me to add B6 to the pill regiment I am taking and they said yes. 

                At the Surgeon’s meeting yesterday he did ask if Dr. Bannen want him to take the mediport out and I asked his office that as well.  They will give that question to Dr. Bannen and get back to me. 

                So there may not be another medical report for a while.  Oh yeah one last item.  At the All-Cancer users group meeting, I asked the group if anyone had had the issue about flying and the cruising altitude causing problems with neuropathy.  No-one heard of that or had experienced that so they will ask around for me.

Folks,

                I am sorry but I cannot keep this to myself.   In the height of being told I am in remission my battle with Social Services has reached a new high and has capped my enthusiasm.   However, it also makes me feel I have a better understanding of the organizations problem.

                This actually goes back to something Mrs. Coley told me a week or so ago.   If you have never worked with Social Services, let me tell you they are a real trip.   It is bad I say or think this because my mother was at one time the Deputy Director of Social Security before her cancer beat her.   I thought the Social Services organization was as helpful and aggressive as she was but that is not the case from my experience and from the experiences of people I have heard from that deal with them.

                Let me set the picture for you then maybe you can correct me where I am seeing this wrong…  Please correct, my fallacies, Please.

                I am a person that has worked 42 of 43 years and many of those years exceeded the yearly Social Security amount that is taken from your payroll check (which is why my return is so much higher than the normal retiree of disabled person).   This was one thing that was given to Social Services in our meetings to establish I am not trying to rip the system off.

                Oh yea, it was also given why I stopped working.  It wasn’t because I just want to stay at home and get “free” money from a special program of the government.  It was because I have a small illness called cancer which is a little stronger than a common cold.  I have spent more than ½ this year in a hospital.   Oh slacker me, I should have been able to get a j0b shouldn’t I?

                Oh stupid me for trying to rectify why I came to Social Services.  Why would I be dumb enough to talk and work with the rental people and work out if I pay the late July and then let them know when the disability would come thru, I would either be normal at the end of September or leave and they sent an itemized letter as to exactly what they wanted and even gave the name and phone number of the person Social Services could talk to.   Yes all this was turned over to both case workers and explained.  Dumb me for doing the job an expert in the Social Services emergency eviction group knows better how to do.

                Oh and let’s look at the person making the request for assistances environment is.   Breadwinner crippled, Mother breast feeding with no knowledge of this area or the USA, speaking very little English, a poor education, and caring for an infant and sick husband the best she can.

                Ok, let’s look at how this helps Social Services emergency eviction group help people.   I finally get the Sherriff’s notice on the door on and go to the Social Services building my first opportunity.   I am asked what do I want and I say eviction protection and show the notice.  I get the standard stack of forms to fill out.  This was a major pile of paper asking for about everything under the sun.

                Fortunately my background challenges me to be prepared and I carried my backpack with almost two tons of papers on my wife, my daughter, and myself.   Caseworker#1 was so impressed because I had every stitch of paper they asked for and even more.

                We went thru why I was there and what was needed and I gave Caseworker#1 copies of my Social Security work history (which even included how much I would be paid for disability), the letter (and conversation) from the Apartment home office, the fact that I was trying to build a home business because I do not intend to live off a social program because I know politicians will eventually wipe them out.   She was so impressed she even told me to her knowledge I was the first person ever coming to that office that brought everything they wanted.   She said she would call the rental office and speak to them tomorrow and get back to me.  She also said that it looked like I qualified for help.  She lastly said, which confused me somewhat, whatever happens don’t become homeless!!???!!

                I waited 1 week then called her back because their process is to pay part and you pay the balance but you have to pay your part first.  I have later found out this amount to around $750 they pay so I would have had to come up with around $200 or so.

                Caseworker#1’s voice message starts by giving her name and saying “I am a part time employee” and gives the days she works.   Let me ask you a question here.  Do you think it could be considered a little counterproductive to have an emergency service dealing with timeliness employ part time help that only works 50% of a work schedule?   Do you think this could even possibly or remotely back things up?  Silly me, I guess when I managed I use to look at my organizations productivity and adjusted based on what was happening, but oh yea that was yesteryear right?

                So the rest of that week I called and left messages for Caseworker#1 and also called the other number her message said to call if this were an emergency.   No return call from either one and I was calling multiple times a day.  Another week went by and now 2 more notices and a letter from the apartment accounting office I now owe $2k.

                So I go up there looking to see a face and raise some cane because I felt this was ridiculous.   A Philippine friend who I know from church happened to be working the front desk and I explained to her why I was there.   She was shocked and somewhat pissed.  She gave me instructions to wait and leave Caseworker#1 a message I was in the lobby and her supervisors contact information.   I waited and after several hours (as usual) got to see Caseworker#1.

                She starts by saying that it looks like there is no way to prevent eviction and starts going over her papers.   I could tell she only called the apartment people before seeing me and had not looked at or remembered anything from August 2^nd.   It was like I never came there then.  Example the amount she said I would get for disability was $640 a month.  When I challenged that her response was “well isn’t that what they normally get?”  I again pointed her to my Social Security printout which said my disability payment would be in excess of $2k.

                I asked of her conversation to the home office which was in the letter I provided.  Her response was “Oh, I did not call that person.”   I had her correct a; her errors and information and told her to call this person and get back to me.   I went home, thought about it and called her supervisor.

                In speaking to her manager he explained her two week absence as she has been out sick and they were just starting to look at giving her cases to other people.  I thought to myself, oh this is how EMERGENCY SERVICES works.   He also said they have been having a problem returning calls.   He told me he would pull my case and if Caseworker#1 had not called me back in 1 week to call him.

                You guessed it; I left messages and after a week I called the manager back.   You would think an employee would have cleaned up their act and started working on the case after they had just been embarrassed for losing 2 weeks and jeopardizing an emergency situation.   Anyway, I would have.  Oh what was his excuse this time for his employee?   She was having car troubles.  

                So let’s review this for a second.   You have an EMERGENCY SERVICES organization staffed by 20 hours a week workers who for 3 weeks cannot get to work more than 5 hours total and you are thinking about distributing her cases to someone else.   As a former manager, this just doesn’t seem to be how I would have been running things.  Does this look fine to you?   Please explain where I do not understand the process?

                Ok enter Caseworker#2.  Now I will get results.  On our initial conversation I go to explain the history and situation to her, but get stopped.   It was like she was busy and didn’t have time for trivial things like background.   She read me the riot act talking about the Social Services way!!!  She concluded she would review things and get back to me.

                The day I got ill and eventually went to the emergency room she called and I could not answer or even get her name and number.   She left me a message to return her call.   Friday when I was in recovery since I remembered the manager’s number I called him and left him a message for her to call me on my cell phone because I was in the hospital.   No return call from that message, I have no idea if he ever gave it to her.

                After I got recovered enough to deal with Social Services frustration and had heard from Dr. Bannen I was in remission, I figured Social Services could not make me feel down or burst my bubble.   I was wrong again.  These guys are good.

                Caseworker#2 and I played some phone tag but eventually spoke.   I asked her could she listen to me and let me explain the background I talked to Caseworker#1 about.   She kept cutting me off saying we already been over that and it will not change anything.   I got a little assertive this time and told her I gave her the respect of listening to her and she needed to give me the same respect.  I guess she knew the battle was starting there.

                After I finished she just merely said “like I said we already discussed that”.  In short she didn’t listen one bit and probably laid the phone on the desk while I talked.

                She went back to explain the “Social Services” way again and I interrupted her this time and went back to all I initially asked for after setting everything up with the rental office about July only.   The shame of July is that I had already partially paid some of it in other months so it was not even a full amount!!!

                Well her answer to what I setup prior to coming to Social Services shocked me.   Are you ready for this?   She said that “Social Services does not care what your work out for a solution with the rental office, they will do things their way and research how things will be paid and done.”   Silly me for believing making one phone call and negotiating with a person who seems to understand personal crisis for a solution.   Dumb me for believing that talking to the other party was important.

                Next she said her manager had a question for me.  The question was does your wife work and I said no.  She said why and my first response was she is breast feeding and while I was getting ready to go over the whole cancer things she blurts out “well I breast feed and worked so you have to do things to help your situation.”

                Now her insensitivity hit my last nerve and pissed me off.  Breast feeding was not how I came to be there, cancer was.  We almost got into an argument because I told her my wife was not going to drop everything and get a job now.   All the prior conversation about how I cannot watch an infant and as you guys know now and having enough trouble taking care of myself.   I am not recovered enough yet to watch an infant, but that doesn’t mean squat to “The Social Services” way.

                She next asked if I applied for TCA and I said no because when I was there asking for what I needed no one would explain what I should be asking for.

                So guess how everything was concluded today?   I need to go to Social Services again.   They do not care about what a person has to go thru.   If she would have listened to my conversation she would have realized my personal environment is my wife was taking care of the baby, but also me.   She is equating cancer with a cold that I should be able to do things she does.

                Somehow I am not understanding the first word of this organization; EMERGENCY.    Friday will be 1 month and I bet they have not even talked to the rental office?   The goal was to stop from being evicted.   Going by the “Social Services” way, it looks like I am guaranteed to be evicted.

                During my romp thru cancer and seeking what has been called entitlement help, this organization has been the most unhelpful, slowest, unorganized, and insensitive organization I have ever dealt with.   Not one thing has gone smoothly thru Social Services and others I have talked to and the people you talk to in the waiting room for a couple hours while you are there echo the same thing.

                I have no idea what tomorrows meetings will bring but I am sure I will be surprised about something I hear or see happening.

Folks,

   Now is time for the long awaited word from Dr. Bannen whether the very aggressive 6 months of chemotherapy has worked or noit to arrest the growth of Cancer within my body.   We knowingly paid a very hard price on the body with the plan we took and Dr. Bannen’s verdict is:

R E M I S S I O N

Folks

                I am actually starting this one before I got home.  Yes I have been back in the hospital although his time not directly because of cancer.  Indirectly you can say cancer was part of the issue.

                This issue was first thought to occur on Wednesday August 24 when Ken, Anna Lee, and I had dinner but honestly it happened before then.   Several days prior to the 24^th I had noticed that when I went to the bathroom I was not having normal bowel movements.  My symptoms were I would have a small squirt of diarrhea and then maybe 1 small solid ball.   I would estimate this went on for maybe 3-4 days.   Now with what I know I would assume this was when the blockage actually started.

                I think why it showed up after the dinner with Ken and Anna Lee is because since I ran out of Honey Baked Ham lunch meat, my meals were nearly nil.  After our dinner it was the first time my stomach was full in a while.

                We ate around 3:30-4pm and around 8 to 8:30 I developed a stomach ache.  About 11:30pm I started throwing up and every 2 hours after that would throw up.

                I got enough energy to send an email for someone to call me in the morning.  I did this because I did not have enough energy to lock the door from when Ken and Anna Lee left and I was afraid I would pass out and no-one would know any different.  I figured if someone called knowing I was ill and if I did not answer, the logical fear would be to check on me.

                Ken called then Milt called and Milt indicated he was coming down and for me to get ready.  I called r. Bannen’s office and the triage nurse said emergency room.  I did send an email saying I was going to the hospital and am IM to Delma to contact Arlena and let her know.

                Even on the way to the hospital I was still throwing up.   The symptom was nearly the exact same as when I went in January and was diagnosed with cancer in the first place.  The hospital emergency room is somewhat a blur but all I remember was a bunch of people pulling me out the car and I am not sure but I think I was carried directly to a bed in the emergency room.

                I know I was answering questions but I have no idea what I said. I think Milt answered all the questions correctly because I am not sure if I even gave them the correct name for me.

                I know I went to x-ray and then I think they gave me an IV with something for pain and vomiting.  Oh yeah, I also remember everyone kept grabbing my hands and they hurt from the neuropathy.  I do remember I was in extreme pain in my feet, hands, and stomach.  I know the pain was intense because I remember I started crying at some point and time.  It was intense.   I kept thinking I really wanted to die because I could not take this anymore.

                I remember Kia and Stef were there and Milt gave me something nasty to drink because I needed to have a cat scan.  I had a cat scan done and I think Milt had to leave then.

                The CAT scan showed something somewhat critical and instead of taking me to a room they carted me directly to surgery.  The same surgeon who did my operation in January would do this one as well.  He explained I had a bowel blockage.  Here is how he explained what happened.

                Think of the bowel being a hose connected to the spout you poop thru.  Whenever you have surgery, scar tissue grows where the cuts were made like weeds growing thru the pavement.  Sometimes these weeds or vines wrap around the hose and can cause it to fold or kink up.  When this happens things cannot pass thru the hose and it backs up.   If it backs up enough, it will back into the body and this can become a deadly situation.

                So in affect they went back inside and cut the vines (scar tissue) and freed the tube to it could pass body waste.  So now I am recovering from the surgery, and fixing of the tube and making sure the tube is not damaged in other areas.  So right now I am on a liquid diet to make sure the tube was not damaged.  Eating and passing what I eat is one thing I have to complete.  I also need to be able to walk, sit up, and other things that are hurt when you have stomach surgery.

                Right now it is Saturday afternoon and I have been able to do everything I need to without a great deal of pain and discomfort.  It looks like Sunday is when I will be released.

                Well I am back entering a little more.  This is more about differences I have noticed within th hospital.   It makes me wonder if there are different ratings for being a nurse of worker in a specific ward.   This I know I need to explain.

                As you know I have spent abut ½ the year or a little more at Shady Grove Hospital.  The first month in ICU so that was different than the rest of the time.  I spent a couple days on a floor I do not remember after leaving ICU so I really have no comment on their area.

                Then close to 6 months on ward 2B for the chemotherapy.   Now about 3-4 days on ward 4D recovering from the bowel blockage.   There is a big difference between 2B and 4D.   There is less a difference between the nurses because they both do a very good and attentive job.   I would say that the nurses on 2B are more attentive to detail and really show overall a little more effort.

                Oh yeah, let me also point out one more major difference between the two wards.  4D is 2 people per room and 2B is private with larger rooms.  This does come into play I think.

                Where I see the bigger difference in the two areas is the support staff for the nurses and the quality of patients.  Let me talk about the support staff first.

                These are the room cleaners, blood takers, meal givers, and vitals checkers.   I saw no difference with the blood takers.   The meal givers on 2B were more courteous.   They would greet you ask if you got all you needed, make adjustments to the meals if necessary.     

                Room cleaners on 2B were like the food people.   They would greet and give conversation and ask if this was a good time.  On 4D it was more just come in and do and make sure you were no in my way while I was sweeping.  Also the 2B cleaners would do the face bowls in the rooms and ask if you needed anything.

                The biggest difference was the vitals takers.    While in general they were ok, they did not stick to their timings.  Also they did not care if you were sleeping or the time they came in either.   On 2B it seemed that after midnight they would let you sleep thru the night and start early in the morning.  I had one vitals checker come in at 3:30am and say I am here to take your vitals!!!!

                Also at night you generally close the door to block hallway noise and light, they would leave the door open, when they talk to one of the patients in the room there was no concern for disturbing the other patient, and even one kept telling the nurse about a private conversation disturbing the night.   I even had a blood taker come to the room at 1:30 am, take up the other person in my room to take blood turning on all the lights talking in a loud tone waking me up (also leaving the door open when she left).

                There are other rules that should b investigated because of the 2 patients per room situation.   During my short stay I had 3 roommates and only one was someone I liked.   The second one was a nice gentleman I had no complaints about.   Hmmm  it is now 4:16am and the vitals person has come back and is waking the other person up taking vitals.  C’mon now.  When is someone supposed to get sleep to get healthy????

                The last gentleman spoke no English (only Russian).  He was quiet except two things created issues for me.  One he has to sleep with the tv on and he has his volume turned up and two he is on the AC side and has the pillows over the vent so there is no air circulation in the room.   My asthma and sinus conditions really need air flow to happen to help me breath.  So his tv woke me at 1 am and now my feet hurt and between the two I cannot sleep.   This will cause me sleep deprivation because the hospitals go on time schedules and I know I will have very high BP readings and hope they do not keep me longer because of that grrrrrrrr.

                The first roommate was by far the worse.  I even asked Janice when she visited me to get me off this ward.  His language was bad cursing all the time using the worse curse words, spitting, abusive verbally to the nurses for trying to help him, pulling th AC vent apart and stuffing pillows in the vent, pushing the heat up over85 in the room and arguing with the nurses when they turned it down (saying if the other guy is hot bring him a fan).  This guy was, pardon my French, a pure ass hole.  Calling for a pain pill nearly every hour, I do believe he was addicted to pain pills.

                With the roommates I had there is one suggestion I would like to give Shady Grove and that is with two patients in a room there should be a cutoff time for the TV to coincide with patients being on the hospital schedule and sleeping thru the night.  Maybe a 1am cutoff time would be acceptable to accomplish this.  Also tell the vitals people that after midnight unless a patient had a special schedule the next day to stay out the rooms from after midnight till 5am or something.

                Lets just put it like this, I will be damn happy to get out of this hospital tomorrow and this by far was my worst stay at Shady Grove.  I will also emphasize that this is not a nurses’ issue, but the people around them did not make this a pleasant stay.  I would also have to be honest by saying for the groups creating the issues; it was not all of them.  But in my observation, I would say that there is a difference in the quality between what happens on 2B and 4D and that difference is significant from a patient’s point of view.  And these days, I am a patient that is experienced this year.