Radation And Stuff

So, I am in the middle of my radiation treatments. I was thinking of a way to describe to someone what is going on with my health. This is the analogy I thought of: Right now we are plugging up holes in the dam. We are not fixing the main problem (the cancer). If we can not fix the problem (finding a treatment that works) the dam is going to keep breaking and it will be impossible to keeping fixing all the holes (tumors) that keep opening (growing). It actually makes a lot of sense for me and for many people who fight cancer. The problem is that the tumors keep popping up and causing pain, but you never get the time to treat the disease. It is getting very frustrating because up to now I have never felt the crunch as I am feeling today. I have always known that the cancer could defeat me, I just never thought that this fear would be happening right now. I expected at least another five years before I faced some of the issues I am facing today. We are talking choosing quality of life over treatment. It is real scary. I am so scared that I am really having a tough time being emotional about it. It is almost like I have no emotions. I thought when this day came I would be crying all day long but I really have yet to cry. This really shocks me especially since I am so emotional. I guess I am in game mode where I am staring death in the face and I am telling it to bring it on. I am thinking it just is not my time and it is not going to happen. I don't think I am accepting the fact that my health is as bad as it is. I guess I have been here before and I think I can keep winning. Is there really any other choice? I am not going to die, I will have to be defeated by being dragged through the mud on my way to the grave. It is not my time. It is not my time. It is not my time. I have too much to see and do and watch. All of those have a lot to do with Alek. I need more time with him. He needs more time with me. Kath and I need to do some things. So whatever Voodoo, prayers, songs any of you have let them loose. I can use all the help I can get.

Well that was tiring. I have a few days of radiation left. I will be home for the weekend and will be able to hang out with Alek and Kath. That will be fun. My wife has been under the gun with work and dealing with Alek by herself. She is truly amazing and is in her own league. I love her and miss her. If you have a chance, please tell her how amazing you think she is.

Still working on Disney Plans. It is not easy to figure out where to stay. If anyone has any ideas of where to stay let me know. We are thinking in the park but with short notice and it being peak season it is very very very expensive to stay at the park. So looking for help, email me at beinder17@yahoo.com

Thanks
Kris

Radiation Plans!

Ok. I will be starting radiation on Wednesday. They will be doing 5 treatments which means I will be done next Tuesday. This is not bad. They will be radiating my left hip to try to kill the tumors in that area.

Dana Farber has communicated to me that I will be able to get into the trial in about 5 weeks. This is also good news as it allows me to do the radiation and recoup for the trial.

I am also considering going on a vacation with my family and my parents. We are thinking about going to Disney. This may be my first and last opportunity to travel to Disney with Alek, so why not do it. With my cancer being so aggressive at this point, we are not sure if I will be able to travel months down the road. We are going to seize the day and live life.

At some point in the next few days/weeks I will try to open up to how I am feeling. Right now I am just not able to deal with my emotions. I have shut down and am not feeling anything. I think I am in complete denial to what is happening to me. So everyone around me, I am sorry that I have become this way. I will try to communicate better.

I also wanted to thank all my friends who have been calling and visiting me. It really helps me get through the day/week. I love seeing you and it confirms how tight of a family we are. Let's all plan many get togethers and make the best of our friendships. I love you all and would not be able to do it without you.

Talk to you soon
Kris

FREEEEEDDOOMMM!! I am out!!!

I got out of the Hospital yesterday afternoon. I feel like a new man. It sure give you a lift not being in the same bed, room, eating the same awful food, blaaahhhhh.

The pain is pretty much controlled for now. That can change any moment but for now it is not that bad and I can definitely deal with it. I am sorry if there are a bunch of spelling and grammatical errors in the last couple blogs. The drugs have made me a little loopy and my brain is not at full strength now, not that it ever was. My short term memory is not that great either so again if I repeat my self or ask you the same question I did yesterday I apologize.

It was great to see Katherine and Alek. They bring a great deal of joy to my life. Just hearing Alek's talk in his own language, laugh and giggle brings a huge smile to my face. I think those sounds will be forever ingrained in our memories. At least I hope they will. It is just really frustrating that I can not help out at all. I am just so depleted of energy and my back and legs are extremely sore and in pain. I am really afraid I would drop Alek. But at least I can be around him and have him sit on my lap.

I am really anxious to get out and do something now, but Kath is doing a good job keeping me grounded. This is what I always do when I get out of the Hospital, I thing I am a teenager and want to get out and then end up almost passing out again. So maybe tomorrow.

Well please feel to ask me any questions you have in the comment area and I will answer them. I have several appointments on Monday so I will update you Monday evening. Right now I am trying to get Red Sox tickets. That is most likely not going to happen because I don't have the patience or stamina to sit in front of the computer all day.

Over and Out.
K.P.B #17

Friday's Update

Wow, a lot of posts this week.  That is what happens when you have WI-FI in a hospital and you have a laptop.  

First mentally I am not in the best state of mind.   I am trying to be positive about what options we may have out there.   However these options/choices are simply like a normal every day guy shooting darts.   You just don't know where that dart is going.   Right now I don't know where I am going.  We know that the cancer is very aggressive now and is coming up in areas that they never imagined and this is obviously very bad and not expected.   The question quickly becomes who much longer can I go through this or how long can my body go through this.  I really don't know.  I can not even think about it right now.   Sorry back to facts.

The orthopedic surgeon came by last night around 6pm.  Yeah I waited all day just to see him at 6pm.   As you can tell, I am a little bitter about that.   He really thinks that I should have the hip area radiated.   There is a tumor the size of a robin's egg in the hip that could be causing the pain.   It it right on top of the hip.   So now it is a matter of getting the docs on the same page, because the radiologist said he did not think it would be worth it to radiate.    I would imagine that once I can speak with the radiologist we could get started pretty quick.   That should alleviate the pain and then I can decide when to start the clinical trial.   I just have to see how much longer they can delay me getting in the trial.   

One thing I can not even start to address is my thoughts of losing Katherine and Alek.   I think I have gone into shock when it comes to this topic.   I don't think I am even able to tap the emotions I have for this subject.    It is way to scary and depressing to even broach.   So for now I will leave it as my wife is the most incredible person for dealing with this.   She is raising a child all by her self right now and it does not look like I will be able to help much over the next couple of weeks/months.   I don't know how she will do it, I just know she will.   I love her so much.    Then there is Alek.   Since last Thursday I have only seen the LG (Little Guy) for a few hours.   I hope I will get to see and hug him today.   

I feel like I have gone on way to long again.   Sorry!! I will post an update later if I speak with the Radiologist.

Peace to the Peeps

The Beinder Man

Lacking Information

Well, it is early Thursday A.M (7:55am) and I still have not idea what the plan is.   One thing that is new is that I have some more new tumors on my lower spinal area and in my upper legs.   Year more new tumors.   This is the really bad news.   Tumors just keep popping up and my counts are very high. (4300 Prolactin)   So the options I have have to be heavily weighed. 

I think the Orthopedic doctors are planning on doing something.   I am not sure if it is a full hip replacement or just a surgery to clean out the tumors in the leg and get rid of the pain.   I am not sure.

One thing I do know is next time I or you go to the hospital I recommend you bring your own toilet paper.   I don't have to get into details for you to figure this out.   Soft tissues vs fine sand paper.   Not rocket science.

I also have a room mate and have not been sleeping well.   He sleeps all day and watches TV all night.  They gave me ear plugs last night because his TV was so loud.   He does not even watch the TV.   It is just background noise.    I have my name in for a single but I am not holding my breath on that one.

I will keep you up to date later today or tomorrow.   Sorry if I have any spelling or grammar mistakes.   My ability to focus on these drugs is not great.   

Outa Here

B

Back in the Hospital!!

Not sure where to start on this post.  I guess first things first.   I am in the hospital up in Dartmouth.   I have been here since Monday afternoon.   Yeah I went from one hospital to the other.   Hospital jumping.   Not quite as fun as "Bar Jumping".   

They have managed to get the pain to a point were I can tolerate it.   I have not had the level of pain I was in for a long long time.    Not fun, not fun at all.   I forget how pain just engulfs your whole personality and you become the biggest bear/grouch in the world.   So I am sorry to those around me if I was a pain in the bum.

Since being here (at Dartmouth) I have only seen a few docs.   There were able to do an MRI, which is going to tell us what is  or is not going on.   I am not sure what to think.   I just want to find out so we can make a game plan.   I need to get some type of treatment fast because my Prolactin counts are rising fast and I need to do something sooner then later.   I am not sure what will happen if I need to get my hip replaced if in deed it is vascular necrosis.    I guess you have to try to look at it with the glass is half full mentality.   If it is a vascular necrosis, it is better then tumors in the hip.   I am hoping the Docs come by soon so I can update you.

I did speak to the Docs at Dana Farber and they are willing to try to keep a spot open on the Clinical trial.   So that is still an option.   They have been really nice and reactive to any questions and help we need.

So for now it is just a waiting game.   I am just on the WWW giving myself pain meds as needed.   I miss Kath and Alek.   It seems like forever that I have seen them, especially Alek since he was not able to visit me.   It has almost been a week.   I hope I am better for his B-Day party.   

I will write later once I speak with the Docs.   I love you all.

More Bad News

I woke up late last night with extreme pain to my hip. I could not sleep at all. My whole left leg is in extreme pain. It feels like a pinched nerve. Most likely it is the tumor in my lower spine or it is vasular neucrosis, which is what I had in my other hip that made me have to get a hip replacement. I am going to be trying to get up to Dartmouth to see if they can figure out what is going on. This most likely means another few days away from Alek and Katherine.

Right now I am in constant pain and I really can not see straight so I better stop writing.

Updates to come later.

Not so Fast!!!

Well, the Kris Beinder Express is slowing down. I just go home from the hospital. I had to go the Emergency room Thursday around mid-night. I was later admitted to the ICU early Friday morning.

Kath and I woke up to Alek and I felt really sick. I tried to make it to the bathroom but ended passing out for several minutes. Katherine had to call 911. She was not sure if I was breathing. As the 911 operator was giving Kath instructions for CPR I came to. Then I was off the the hospital.

It turns out that my blood pressure was extremely low and all my blood counts were very low. In the words of the doctor, if you were not so young these level would be a matter of life and death. Due to this I ended up needing to get a blood transfusion and stay in the ICU for a few days having my heart and blood pressure monitored every hour.

I just got out this evening. They are still not positive at what caused my counts to get so out of whack and my blood pressure to drop so low. I need to schedule an appointment with Dr. Fadul some time this week for him to do an evaluation. It could be that all the chemo, radiation, along with the stomach bug and bronchitis just did a number on my body. Another reason could be that I have a small ulcer that is bleeding and caused the counts to go so low. Or worse case scenario is that the cancer has spread to my bone marrow and is not allowing me to produce red blood cells. I am still very tired and have to be very careful of what I do.

This is also going to delay my plans to get into the Clinical Trial in Dana Farber. My blood levels are going to have to come up before I can get into the trial. Right now I don't know how long but at least a couple weeks for sure.

I will keep you updated but I am going to go get some rest right now.

Kris

Off to Dana Farber

Sorry that it has been a while since I posted. Alek got hit by a stomach bug that he passed on to me. He has had it for about 6 days and I had it for one day but have felt rough for the last few days since I had the bug. Kath has not had the full fledged bug, although this morning when she woke she did not feel so good and has been battling through the day not feeling great. Let's hope she does not get the real deal.

So I will be going down to Dana Farber next week for testing for the Clinical Trial. If all the tests go well then I will start the trial on Monday January 26th. I will have to go to Boston 2 days a week for this trial (Monday's and Thursday's). During the first cycle (first month) the Monday treatments will be 10 hour days and a few of the Thursday treatments will be 10 hours days starting at 7am in the morning. Why such long days? They test you all day after they give you the drug. So I am in for some long days at Dana Farber. The good thing is the hospital is has WI-FI and I have plenty of books and over the last year I have become quite good at napping/sleeping. I might be able to win a sleeping competition if they had them. I will most likely not know how the trial is going until the second month. Let's hope this will stop the Prolactin from going up and maybe even come down in the first few months of the trial. I have to say the Docs down at Dana Farber have been excellent and there are a few options they have in mind if this does not work.

New Years: I had a great new year with the normal New Year's gang. New Year's is great because it is a the last and first Holiday off the year, but it is also sad because it wraps up a the winter holiday season (Thanksgiving to New Years). Leave it to me to think of the negatives of New Years. Sorry. The one thing I do want to share is that saying good bye to all my friends was really tough this year. I guess at the stage of where I am with my cancer I wonder how many more new years do I have left. Could this have been my last? Most likely not but when you are in my shoes that is how you think. I wish it wasn't so but it is. Almost every thing I do that is not a normal everyday occurrence I think is that the last time I will do this and/or I am glad I got to experience this at least once.

One thing I will get to experience is Alek's first Birthday. WOW, WOW, WOW!!! I can not believe MY SON ALEK is going to be one year old on February 3rd, the day the Patriots lost to the Giants in the Superbowl. That loss will be forever tied to my son's birth. I know we say time flies but time does really fly. Holy Cow!!! It just seemed like a few months ago he was starting day care. Now he is walking and about to turn one. If you would have asked me if I would ever witness my son turning one eight to ten years I ago I would and laughed and said you are crazy. This little bugger is my little bundle of joy. If I had to choose between not having cancer and having a family I would choose cancer any day. I know that sounds crazy but I love Kath and Alek so much (as I am getting emotional as I am writing this).

Followers: I have added a few more followers but want more. Come on I know there are people out there that read this that are not followers. I want to get to 50 by the end of this year.

I am sure you will be hearing from me more often since I will be sitting at the Hospital for those ten hours day with nothing else to do then surf the WWW and write posts on my blog.

Over and Out
The B Man