Tuesday, January 25, 2005

1/25/05 Strong Like Bull but Sad

Today is a very sad day for me. Due to my transplant I was told to remove all of the plants in my home or put them all in one place. I decided to place them all in my sun room that does not have any heat but I keep a heater in the room to keep the plants alive during the cold months. I also usually only keep a limited number of plants there due to the weather extremes. In one of my posts a couple of days ago I mentioned a blackout in my neighborhood which only lasted a couple of hours but unfortunately when the power goes down this heater does not turn back on. This morning when I looked at all these plants it reminded me of the landscape in Iraq, everything looks like death & destruction. I then realized that the heater must of turned off and I turned it back on. My Mom the Plant Lady will be up this weekend to see what she can salvage but what ever survives will be bald for a long time, just like a chemo therapy patient. If it takes another ten years than I will just have to wait. I plan on sticking around a good long time. I am feeling strong like bull.

Monday, January 24, 2005

1/24/05 I See It as It Is

Some of you blog readers, not mentioning anybody or any group of individuals, seem to think my thinking might be a little left. I just think it is jealousy on your part that you can not see things the left way like me. Besides I am not that left, I am a registered Independent and when something stinks I can smell it; meaning this administration. On the other hand it is a good sign that I am doing well, still ready and willing to fight and ornery as ever. It is true that this is a good sign of my health. Healthy mind, healthy body or one getting healthier every day. I will be back in Boston on this Thursday and hopefully the storm on Wednesday will actually be on Wednesday. If not Thursday then we go on Friday. Alex & Emily have still been behaving pretty well but I can see that starting to wear off. I may have to leave for a few days to get them back on track. Only kidding, I am not going anywhere.

Sunday, January 23, 2005

1/23/05 The excitement is killing me

Well today was an interesting day, first of all it did not snow as much as they predicted, at least not here in town. It is cold as can be and windy but besides that. The next thing to happen today was at 4 PM this afternoon we had a power outage. Jane had just gone out to pick up Emily from a friends so she could not get back in the garage easily; I just put some cookies in the oven to bake and the electricity went out. The cookies were ruined and I through them out. A chocolate chip cookie has to be baked just right. Also Johnny Carson died today, I remember watching him as a young lad, you know when we used to walk 10 miles to school every day - HA HA HA. I am doing fine today, paying more bills, getting tax info together and just plain old hanging around. Alex went outside with Jane for a short time (3 minutes) but it was too cold for them. If you read my comments I am getting them from all over the place from people I do not even know. This blogging stuff is neato, coolo, groovy man.

Saturday, January 22, 2005

1/22/05 Let it Snow, Let it Snow

It sounds like a lot of snow till to come. Today I feel good, look good and am good. I am being very lazy and not doing much of anything. Did you catch a glance of me at George W. Bush's inaugural acceptance speech. I was the one yelling at him in the front, yeah they did not show much of me on TV but you could hear his supporters beating me with their Bibles. I have to take my anger out on somebody. You all know it was not me; but it does sound like something I would do; could it have been me? Did I tell you that I can not drink spring water or well water since it may contain bacteria and must drink water like Desani which is bottled by Coke and from a municipal source, not some beautiful mountain stream, but probably some dirty bathroom in their factory somewhere in some no name country overseas.

Since I have returned home everybody has been a little bit more at ease. Emily and Alex only kabonged each other a couple of times today. Emily sold Girl Scout cookies today at a local Borders and then they went to the Library to rent some videos to keep them busy indoors. I will try tomorrow to take them outside if Jane will let me. Keep warm.

Friday, January 21, 2005

1/21/05 It's a Beautiful Day

We took Emily and Alex to school and headed to Dana Farber. We got there about 11 AM and I want to phlebotamy to get my blood counts taken. When I met with my Doc 45 minutes later and he pulled up my counts, they were beautiful. This is true confirmation to me that I am on the mend. The biggest concern at this point will be Host vs. Graft Disease (HVGD) which is essentially a form of rejection. This will probably not be a concern till about the 2 1/2 to 3 month post transplant time frame when they start weaning me off the rejection drugs I am currently taking although it still can happen anytime. I then went next door to Brigham & Woman's to have my Hickman Port removed. When I got there and was lying on the bed the nurse came over and asked me if I was getting a pace maker and I told her no I was getting my port out and showed her my port; she then asked me about how my bypass went and I told her I have no heart problems I just want my port out. For some reason my into was on the same page as somebody else's and the Nurse put me on my own page. The Doc came over tugged on the port and out it came. He put a little pressure on the entry point and it stopped bleeding and that was that. All of about 15 minutes. Now I will no longer have to cover my port with a big sticky plastic sheet in order to take a shower. Now that is living. We were back by 5 PM to pick the kids up from after school. I do not need to go back till next Thursday.

Anyhow I was wondering why Rumsfeld a few hours before the big inaugural party said in an interview that Iran was next. Then our President gives his great acceptance speech about freedom and our soldiers but forgets to mention that this country is at war and losing badly. He never mentions Iraq once in his speech?

The moral of today's story is to know or bring somebody with you who knows exactly what procedure you are having done. Nobody wants or needs mistakes.

Thursday, January 20, 2005

1/20/05 Tomorrow I lose my Port

I am scheduled to see my Doc tomorrow and also to have my port removed from my chest. Supposedly only a 15 minute procedure that I can come down anytime to have done. That scares me; I will end up spending all day there probably but it will allow me more freedom and I am all for that. The Patriot Act has nothing to do with these freedoms but it might be in the small print somewhere. I have had another good day, a fun filled day paying all my bills and trying to get my all-in-one printer to fax. I can tell you a few kicks did not help. Anyhow I will leave you with a short one after last nights and will keep you advised about my visit to Boston tomorrow. At least there is no snow in the forecast.

Wednesday, January 19, 2005

1/19/05 I have been thinking

Just those mere words must have scared the hell out of you. I got married in 1993 right after a hail storm and the place we were getting married at had a black out which I am sure many of you still sweat about when/if you ever think about it. 100% humidity, 100 degrees and no air conditioning, the food was not as we paid for, no electricity till after 10 PM that night, when the band played too loud the little emergency power we had would turn off and many of the older folks went out to their cars or back to their rooms which did have electricity or power to cool off. After a year of marriage we wanted children and had a number of procedures at Cornell over the next few years with no success. One 1/2 years (3/95) after our marriage I was diagnosed with Chronic lymphocites Leukemia (CLL). The few months prior to starting my chemo I had to go to Yale, wait in a line to use the bathroom and get myself off in a little plastic jar or what others might call, bank sperm. This was to insure our ability to have children. The elevator was right next door and you could always hear people talking; do you know how that feels with you pants down around your ankles? You could always tell there was somebody next in line because they were holding a little brown bag which only you and everybody else there new contained that sacred plastic container. The bathroom was just a regular bathroom with a few ripped up used magazines and nowhere even to put them down except the sink. These factors really made you feel relaxed. The best part was taking your sperm upstairs to a women technician to have her count it for you. I then went through 10 months of chemotherapy and a Bone Marrow Transplant (7/96) at a Harvard affiliated hospital, the Dana Farber Cancer Institute. Post transplant I had a lung biopsy, my thyroid burnt out, I became anemic and my vision went from perfect to nearly nothing due to wet macular degeneration with required multiple laser surgeries and cataract surgery on both eyes. During this time we proceeded with many unsuccessful attempts at conceiving and decided to adopt children choosing Russia as our country of choice. In 1998 we adopted a girl and in 2001 we adopted a boy. For the next year all was pretty good or as good as it can be with two young children. They were/are both adorable and we could not ask for any better children but kids will be kids. By February 2003 I came out of a 6 1/2 year remission. Over the next 18 months we tried 3 Donor Lymphocyte infusions (DLI's) including one utilizing Dendritic Cells. I was the first patient ever to have Dendritic cells infused into me. All three DLI's failed and my counts continued to rise rapidly after each failure. We were able to bring them down with a monoclonal antibody, but it would only work for about 6 weeks; not long enough for the DLI's to have a real chance. In July of 2004 I was faced with what to do next to keep my life going and decided to go for a Stem Cell Transplant referred to as a Mini Transplant. For the next 4 months from July 2004 I had 4 sessions consisting of 5 straight days of a combination treatment consisting of chemotherapy and another monoclonal antibody. The monoclonal antibody was supposed to be tough at the beginning session or 2 and most people had less problems as treatments went on. In my case as the treatments went on I had more issues and that was why we stopped at 4. Over the next 2 months I was busy getting tested in preparation for my second transplant. Three weeks prior I needed to get my sinus' rotor rootered. On 12/28 I was admitted to another Harvard affiliated hospital on, Brigham & Women's, which performs all in patient services for Dana Farber these days. The rest you can read about in this blog.

I guess I must be a very smart person having been educated by 3 different Ivy League Schools - Yale, Cornell and Harvard.

The past 11+ years have been quite a wild ride for me and my family. But here I am post transplant, feeling good, with a positive attitude and just looking forward to being able to do and go where, when and how I want to at my discretion.

Tuesday, January 18, 2005

1/18/05 Status Quo

Today I felt very strong just like that "Girlie Man" out in California. Okay his muscles are not quite as big as mine but close. The day was quite since Emily and Alex were in school most of the day. I went through my 1500 work e-mails from the past 3 weeks I was gone, which were mostly for sex, drugs or a Rolex. I need to figure out how to stop all this crap I get. I have Norton Anti-Virus and Zone Alarm Pro but the spam keeps coming. Any suggestions out there? I am patiently waiting for the recliner/rocking chair I bought so that I have something comfortable to sit on. I ordered it from Bob's Discount Furniture with that dope Bob you see on TV doing all his own boring commercials you could vomit from. I need something to keep me busy but he really needs something to keep him busy and off TV. Jane was very good to me and cooked me a very nice dinner, yummy it was delicious. And you thought Jane did not even know where the stove was, well she fooled all of you. You know it is just a little too cold out there for humans but then again I have a cousin in school in Minnesota where it is 50 below zero so I guess we are not too bad.

Monday, January 17, 2005

1/17/05 A Very Good Day, Back from Boston

I left last night for my appointment due to the impending snow that did not arrive and had my visit with my Doc today. My counts looked very promising prompting my Doc to ask "are you sure these are your counts." He has taken me off a couple of the meds I was on and is looking to remove the port (Hickman) from my chest this Friday if we can get it scheduled. He also has allowed me to start using a toothbrush instead of a Toothette (disposable oral swab). The swab is used because your mouth carries a lot of bacteria and when your counts are low can posses a problem. You do not know how the little things in life like using a toothbrush are so taken for granted or eating an egg salad sandwich; something that is not canned, frozen or microwaveable. I also do not have to go back to Boston until this Friday; that is 4 nights in a row in my own house, with my family, in my own bed with my own bathroom, with a refrigerator with food I can eat, not having to wear latex gloves and a mask. Of course the masks are still good for armed robbery.

My real thoughts today are of some strong progress in the healing process that hopefully will only continue.

Sunday, January 16, 2005

1/16/05 Back to Boston

Well my wish of the Patriots losing did not happen, the Indiana Colts just did not have it. I live in New England so I guess I have to root for the Pats now.

I have an appointment with my Doc tomorrow for a follow up to my infusions and general health and was expecting to leave in the morning but unfortunately the weather did not cooperate. My mom and I arrived in Boston about 6 PM and it was already snowing and sticking to the ground. When I left Alex was very upset and crying and subsequently told Jane that he loved daddy. Emily had a play date so she left about noon and gave me a an extremely big and long hug and said goodbye. My bone pain stopped last night and I got a good nights sleep. I hope I do not have to take more injections that are going to make my bones hurt. I am feeling good and will wait to see what the Doc has to say tomorrow. I am looking forward to my counts improving in the near term so that I only have to come to Boston once a week. This crap has been going on for the last 23 months, actually since 1995, and I am tired of it. I just want back to a semi normal life. I know what your thinking, Dean is not normal.

Saturday, January 15, 2005

1/15/05 Home Sweet Home

I got up today at 6:30 AM for my 7:30 AM infusion appointment. I got one unit of platelets and 2 units of red blood cells. In all it took about 6 hours with out any issues. My pelvis was still hurting and throbbing from the growth factor although I did get a half decent nights sleep. They asked me if I wanted pain medication besides Tylenol and at first I said no but ultimately the Doc in charge gave me a pill (narcotic) that at first did not work that well but after a while killed the pain. He wrote me a script for the same thing in liquid form, why liquid I do not know, but there was not a pharmacy around the area that carried it. Because it is a narcotic it is not allowed to be called into the pharmacy so that the Doc could do nothing. Fortunately, after my sinus rotor-rooter in early December that Doc gave me an equivalent drug. I did not realize I had it until another of my Doc's suggested I look in my medicine cabinet. Anyhow that solved all my pain killer needs for now. I am quite sure that you never have experienced bone pain from your stem cells expanding rapidly in your bone marrow but it is the wierdest feeling you could imagine and painful.

About the best part of my day, I arrived back to my house around 5:30 PM to a tremendous reception from Emily and Alex. An hour later they were watching TV. Emily seems very distraught about me and Jane being gone and does not quite understand why we were in a Hotel room part of our stay. She acquaints that with vacation and wants to know why mommy and daddy go on vacation so much without her. Some vacation, anybody who wants to go on this vacation must be wacked out of their minds. Alex is very huggy and kissy and had a smile from ear to ear when he first saw me but is acting out some, particularly on his sister. It is great to be in my home and to eat something that is not out of a can or frozen. We go back to Boston on Monday morning, very early for a 9 AM appointment. My Mom and I will probably go so Jane can hang with the kids. I should be back later in the day.

By the way did anybody notice that the inaugural party for our President is going to cost $45MM plus another $12MM that Washington D.C. will have to pay from out of their taxpayers pockets. Shame, Shame, Shame!!!

Friday, January 14, 2005

1/14/05 Today SUCKS

Last night I did not get a wink of sleep, the growth factor to stimulate white blood cell growth can sometimes cause what they call bone pain. For the last 9 days I have been injecting this medicine without any problems but last night my pelvis area ached and throbbed like I had never felt before. I thought it might be lower back pain due to being in bed for so many days so I tried the standard things I usually do to get comfortable. It did not matter if I was laying on my back, stomach, side, on the floor in a chair with green eggs & ham it hurt like hell. So my day did not start off very well. We then went over for my Doc appointment and low and behold my red blood cells and platelets counts were very low and we need to do infusions to bring those counts up to acceptable levels. The white blood cells looked like they were starting to recover but the growth factor does nothing for the red blood cells or platelets. They also decided to take me off of the growth factor to stop the bone pain. Of course there is a catch to everything, the pain may take a few days to stop. I guess I will have some more comfortable nights to look forward to. The infusions tomorrow will take between 4 & 6 hours so I will get home on Saturday night now. Alex and Emily are going to be very disappointed and I would imagine Alex will express his discontent by acting out. I still have to come back on Monday for a Doc appointment and there is a possibility that I might need more infusions. One bone marrow transplant sucks and two suck even more. I just want to see Emily and Alex and be in the comforts of my own home.

As I am composing this Dana Farber called me back to let me know that the only infusion time available on Monday is at 11 AM and that I need to be there 2 hours prior. That means that I have to leave Sunday night.

Now you can see how today, tomorrow and now Monday really suck. You know, I hate Boston and hope the Pats get their butts kicked this weekend.

Thursday, January 13, 2005

1/13/05 The Counts Drop Out

I do not feel bad today but do feel a little more tired than normal. This must be my counts dropping to their low. Hopefully tomorrow they will start to improve. I guess we will find out at my Doc visit tomorrow. I plan on leaving after my appointment so hopefully no infusions will be needed. Either way I do plan on being home some time tomorrow afternoon or early evening if the weather cooperates with us. It was supposed to be 60 degrees here today but as of 2 PM it was still cold outside.

Reading the paper the last few days I have some interesting observations:

I read in the paper today that our government has declared that there were "No Weapons of Mass Destruction in Iraq" duh, and previously they told us that there was "No connection between Iraq and Al-Queda." What have we accomplished with this war?

I also read that our trade deficit with countries is the highest it has ever been and that the value of our. Dollar is extremely low due to this. Can we produce any products or services in this country anymore?

What has happened to our prosperous country and its reputation around the globe?

Wednesday, January 12, 2005

1/12/05 Counts are Dropping

I saw my Doc today and as expected on the 8-10 day range my counts have dropped. My white blood cell count is about half of what it was yesterday but still at an acceptable level and my platelets are "19". If my platelets drop below the "10" range they may want to give me an infusion of platelets. Also as expected the counts drop for a few days and then start to recover. Hopefully when I go back to the Doc on Friday my counts will be on the rise and this will not be an issue. I feel fine and am no more tired than normal but when platelets are low you are prone to bruising. I do not know if I ever mentioned but I have been injecting myself with Neupogen post transplant, which is a Growth Factor that stimulates white blood cell growth. Yesterday's shot caused a bruise that may have been caused by the low platelet count or just my nervousness about giving myself the injections. I had to do this after my last transplant but did not have the same nervousness that I have this time. It really does not hurt it just is not something one does usually. Today will be a fairly quite day and I have nobody or nothing to bitch about, although the day is still young.

Tuesday, January 11, 2005

1/11/05 All Quiet Today

My Doc had indicated to me that about 7-10 days post-transplant my blood (white blood cells, platelets, lymphocytes, etc...) would drop and then recover in a few days. I believe this time frame would be the time I might need transfusions if my counts got too low. My counts did start to drop yesterday and I presume have continued today but I feel fine at this point. I do have appointments with my Doc tomorrow and Friday so we will see where my counts stand at those points. I am still hanging out with my beautiful wife just taking it easy. On the home front Alex and Emily are behaving much better for my Mom then she did for Jane when she was home. My Mom has had some time to get back to her house in the last couple of days and even for a much needed visit to one of her best friends and cousin for sanity sake. This whole ordeal is very difficult for Mom as you can imagine.

Monday, January 10, 2005

1/10/05 Heading Home Soon

First of all I want to congratulate Michael Moore on his People's Choice Award for "Best Movie of the Year". I know what you Religious RIght Republicans are thinking is that it must have been Liberal Democrats on a calling campaign to get Michael Moore this award. I know that is not true and you Republicans hiding in the closet wishing you were Democrats voted in large numbers for Fahrenheit 911 but you could not do it in fear of excommunication. On another thought, I am just so distraught at the fact that Brad & Jen are breaking up. After their long marriage of 4 years what a surprise and shock it probably is too all those with nothing better in life to worry about. Don't they have a name for these people "White Trash." Okay, maybe I am being a little harsh but hurry up the Jerry Springer show is almost over.

The real news is that I will be heading home on Friday. I will have many day trips afterwards but hopefully nothing longer term. I had my third anti-rejection treatment today and feel fine. The protocol is for either 3 or 4 treatments but the thought at this point is that they will probably not do the fourth one. I have my wife back, a hotel room that is quite nice, 2 rooms, and another 4 days is bearable. I can not wait to see Emily and Alex and know that they can not wait to see me.

Sunday, January 09, 2005

1/9/05 Off to a Newer, Nicer Hotel

Today we switched to a much nicer hotel, a Doubletree Suites so have 2 rooms to walk around now. Also my Mom headed home to be with the children, Lloyd came down for a few hours to keep me company and Jane took the train here. She went first class, free lunch and wine; boy is she living the high life. We also bought a video screen to attach to the phone so the children could see me and that I am fine and so that I can see them, those beautiful kids. That is with no bias of course. Tomorrow I go for my third anti-rejection treatment and possibly my last and may be able to head home earlier than expected. That is not to say that I will not have to be up to Boston once or twice a week. The other thing you may notice is that my blog each day takes a long time to post so sometimes the day it is delivered is the day after I post. I guess this blogging thing is not perfected yet.

Saturday, January 08, 2005

1/08/05 Fun as usual

Although I am not allowed any restaurant or outside food that is not pre-packaged for the next few months I found out I am allowed coffee from the outside. Today, I went across the street and got a cup of Starbucks coffee. I do believe that food donations from friends is welcome as long as it is freshly cooked and from a clean sterile environment. I still feel fine and will just rest today as everyday so far. Tomorrow Jane will be back in Boston and my mom will go home to be with the children. I have a video phone my mom will bring home so the children can see me. Alex does not want to talk to me unless he can see me. The kids are definitely having a hard time understanding this whole ordeal. Hopefully it will be for the better for the long term.

Friday, January 07, 2005

1/7/05 3 Days Post Transplant

Once again I have survived another day with no issues. I received my 2nd treatment of anti-rejection medication which is actually an old chemotherapy they use to immuno-supress my system for the near term. It is a 15 minute IV drip which today included a 3 hour wait since the infusion room was backed up. Of course this did not irritate me at all waiting 3 hours for 15 minutes of treatment so I had patient relations come down and speak with me. They know this is a problem and need people like myself to speak up so that they can convince the top brass that changes need to be made. I was not the first to complain and will not be the last. Overall, Dana Farber has been a great place for treatment. The staff is fantastic and responsive at Dana Farber and the facility is a friendly, warm environment most of the time. Unfortunately cancer is a growing business and top brass has to have some concern about the patients quality of life issues. I also will be writing to The Brigham & Women's Head of Patient Relations since I was in an isolation room due to concerns about immunosuppression and catching colds, infections and so forth from others yet every day a few times a day the smell of diesel fumes from delivery trucks circulated my room. Must be good for ones health. Evidently this has been a problem for some time due to the ventilation system being on the side of the building where they get deliveries and these trucks are not allowed to idle during their deliveries but still do.


Thursday, January 06, 2005

1/6/05 POST TRANSPLANT

I broke loose from my room last night about 7:30 PM and am over at the hotel next door to the Dana Farber. It is a fine establishment that will depress you if you are not already. Not quite as bad as the Mouse Trap, for those of you who have been to that fine upstate NY establishment. I am feeling damn good but still have a lousy disposition but I always had that. I anticipate that next week might be a little tougher. I go to Dana Farber tomorrow for more rejection drugs as if I have not had enough rejection in life. I am stuck in this hotel room which is one step up from my hospital room but on Sunday go to another hotel that is a suite so will have 2 rooms to go between, how exciting. That is all for now but will update you tomorrow.

Tuesday, January 04, 2005

1/4/05 Captain Stem Cell Day

Today was the day that Captain Stem Cell roared into Boston and after 5 hours collected enough stem cells to be infused into me. About 6:30 PM the stem cells arrived in a golden urn and were given to me. Keith, Lloyd and my Mom were in the room and Jane was on the phone. I got some benedryl to prevent any reactions and boy is that stuff good when it is dripped by IV. I was feeling so so all day and was not sure if it was the anticipation of it all but I am feeling much better, thank you. I had some water and Doritos as a snack and will now go back to bed to rest. Keith will be leaving tomorrow with nothing but a few holes in his arm and the knowledge that he has done a deed of all deeds. For that I don him King Keith.

Monday, January 03, 2005

1/3/05 Cell Boy Arrives

Boy this year is flying by, already January 3rd. Keith is on his way up and tomorrow will be the big day. I am feeling good and just sitting around blogging and watching TV. It has been uneventful but I am getting bored of this room. Will probably walk the 50 feet of hallway I can with my mask and gloves on. Makes that walk real enjoyable. I miss my children and can not wait to see them. Got to go the video phone guy is here to fix our phone.

Sunday, January 02, 2005

1/2/05 Chemo Complete

I completed my chemo with no major events and am now just relaxing. I am having so much fun I could just jump out of my skin. Jane is home with the children to get them back into school and my mother is still up here with me. I also had Lloyd & Linda come down to visit. Keith will be up tomorrow night and will see him and then will get his stem cells Tuesday evening. Another cocktail for the ages.

I was thinking about the disaster in Asia and the impact on the world and was just wondering why George W. Bush cut back his lush 4 day, $40MM+ re-election party and have a one day $5MM party donating the rest of the money to the 9 countries who have lost close to 200,000 people and counting. I think you can throw a pretty damn good party for $5MM, don't you? Or perhaps that money could be used to supply our soldiers in battle with armor for themselves or for their vehicles?

All have a good day back to work tomorrow.




Saturday, January 01, 2005

1/1/2005 It Is 2005 Already

Holy tamale, a new year is upon us; who will we go to war with this year. Today is my last chemo treatment and all is expected to go well. I will then have some rest days as if I do not have enough rest already; except for the staff waking you up at 5 AM to take blood and your vitals. I despise those nurses for that; how would they feel if I woke them up and took their blood in the middle of a good nights sleep. Keith has been taking his shots well without any problems; he is the man. Alex & Emily miss me and are upset that they can not see me; we have some video phones that Dana Farber lent us but can not get them to work properly and they are all off for the New Year's holiday. I think I hate them too. Now, you see I am feeling all right and am still ornery and nasty and and and

Enjoy football and a few beers for me. See you not too soon.