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Tuesday, March 29, 2011 3:29 PM CDT
Things are up in the air right now. I had a week long stint in the hospital at the end of February that had me sick for a little while so sorry for the update and not feeling like coming on here to update and talk about how lousy I felt. I really just had no desire to be on a computer. I am getting a PET/CT on Thursday so I will find out whats up then. I had a long list of things that were wrong with me that they found out when I was hospitalized. I was sick at home for about a week and then sick in the hospital for about a week. Throwing up blood, low sodium, bacteria in my stomach, rsv infection and something else I can't remember. My white count is now very low so it has been a bad end of winter for me. looking forward to warmer weather. Again, I am sorry but I have been tired and sad and sick of the whole nasty merry-go-around of constantly being sick. I just want off!!!! I want to be healthy for a change and let my body recover and rebuild.
I hope you all are doing well and I wish you all the best.
Mike
Tuesday, January 18, 2011 8:37 AM CST
Well 2011 is upon us and everything is status quo. I have been working at Blue Mountain a very little bit and that has gone fine. I have been very sore from working but mostly because I have gone of all medicines. All of my pain meds and even ibuprofin. I never thought I would be able to get off of the pain meds, mainly because there were narcotics but I went did it cold turkey and went ok. Not great but ok. We are now trying to get our household back in order and try and move forward without having to always think about cancer.Especially financially. Becky has been working her butt off with the Silversilk business in hopes that we can some day have some kind of savings again, but more importantly it is the thrill of running a successful business. We enjoy working together in that. The girls are enjoying the snowboarding and skiing as much as they can. They were just up there yesterday from 10:00 am to 7:00 pm. They are insane.
I still have somerphysical problems like muscular, bone and my lungs so I need to get to a lung specialist and see how damaged they are and see if there is any way to recover. All in all we are plugging away and almost into the second month of 2011 already. Crazy how time flies by so fast. Well, for those that still check in I hope you are doing well and that 2011 is a good year for all. Take care and never ever give up!
Mike
Friday, December 17, 2010 12:45 AM CST
Merry Christmas to all and happy new year to everyone!! Thanks for everything over the last few years. Could not have done this without the love and support of friends and strangers. I wish you all the happines, love and health that you can handle for the the new year and beyond. God bless all of you and enjoy your families and loved ones this holiday. That truely is what makes life worth living. Talk to you next year. Live large, live happy and never ever give up.
Love,
Mike
Monday, November 1, 2010 10:52 AM CDT
I know every time I write a new jounral I say I am sorry, but again I am sorry for the long delay in updates. I know there isn't many people that still even check this website anymore but since the people that still do check on me have been here for me through my whole journey I feel like I owe it to you to still keep this updated. This website is what got me through my really bad times. Like being in the hospital for 4 months or so and not being able to leave the room or have any outside contact with the outside world. My only vice was seeing my kids outside my hospital window across the parking lot up on the top level of a parking garage every day and Becky being allowed to come in my room. This website is what helped me make it through all of my nightmare experiences. You guys have been here for me to laugh to cry and to just be pissed. So thank you and I am sorry for being slow on the updates.
Well, we have been very busy with all three girls playing soccer, Emma in the Pennsylvannia Youth Theater, Kylie busy with the National Jonior Honor Society and Mya and Kylie playing softball as well. Becky has been incredibly busy making the silversilk business a success. I have been helping her as well with that business whenever I can. The company has moved to Bethlehem so that has been good for Becky and that is what has allowed me to be able to help out when needed and when I can. Becky and I went to Texas about a month ago for a jewelry show and Silversilk was very well received by the southwest. It also allowed Becky and I to be able to be alone for a couple days, which hasn't happened in a long while.
As far as the Cancer battle all is still going well I guess. I have been receiving chemo every three weeks still. It has been taking me a little longer to recover from the treatment the last couple times so I am a little worried about my PET scan that is coming up in a couple weeks, but I am sure everything is still in remission and I am just being paranoid.
Becky and I have also kind of started our non-profit by setting up a Vera Bradley Bingo for a woman we know that has been diagnosed with Non-Hodgkins Lymphoma. She is the mother of two daughters who is married with no insurance. We know her from our kids playing soccer with their kids for about the last four years or so. So knowing how tough of a financial battle cancer is as well as an emotional and physical roller coaster we wanted to help. We want to get a non-profit set up called for all the mikes so that we can do this whenever we here of someone that has been diagnosed and needs help. We still need to find a lawyer that will file our 501C3 for us for free so we can really be a non-profit. We want to do fundaraisers so that we can give cancer patients money with no strings attached. That they can pay bills, by groceries, pay for gas or just go out to dinner as a family with. We want to pay it forward for all of the luck that we had while I was sick. There was always something that came up that helped us when we needed it. It was amazing and we want to give that to people as well.
Well, I hope you all are doing well and that life is treating you all well. Take care and god bless. Live large everybody and breath in every second you have in life. It is to quick not to. Never ever give up because failure is not an option!!!!
Love you all,
Mike
Monday, August 30, 2010 10:46 AM CDT Ok Becky Klotz I am sorry for the delay in the update. Its been a busy summer. The summer has flown by so fast. Kind of a bummer because I miss having the kids around. I hate them being in school although some times its nice to have a break. Wednesday, July 14, 2010 12:35 AM CDT I just want to thank each and every one of you so so much. I can not tell you all how much you really mean to me. People from all over North America have written and given me support. Some of them I don't even know and still they have given unselfishly their prayers and wishes to me, a stranger. It amazes me and makes me think every day that there truely are good people in this world who love and care about complete strangers. I just wish there was more that we could do more on an international level. Like for children in South Africa or for the people of Chile just to name a few. Thanks to all of you. Monday, June 21, 2010 3:35 PM CDT Well, since Becky Klotz keeps pushing me for an update every month I guess I am due for Junes update. Just kidding Becky. I have been doing ok since the awesome news. I have had 2 treatments since then so I still have all the wonderful side effects and my breathing is absolutely terrible, especially when it is so hot and humid. Don't get me wrong I am loving the heat. I love being warm versus always being cold during the winter. I just wish it didn't feel like I have someone standing on my chest when I try to breath. I am still very happy and feel extremely lucky for the most amazing news. I know it could always be worse. I have athritis in my hands, feet and knees and my hips are a whole other story but I will cross that bridge when I come to it. I just got back from being at my kids softball camps and soccer camps today. All day out in the awesome weather, but in the shade. I also had an amzing Father's Day yesterday thanks to Becky and the girls. Thank you to them. So happy belated Father's Day to all the Dads out there. I am being kept busy by the girls and attempting to write a book but not sure where I am at right now. So we are enjoying our summer of health and just keepin on. Thats all you can do...ENJOY LIFE!!! I am still getting teatments every three weeks in hopes that I stay in remission and I will continue with them for a year and then we will see what the future holds for us. As for now.....I am happy to be here and spending time with the 4 girls in my life. LIFE IS GOOD and we are enjoying as much as we can. Thanks for all your congratulations and I hope you are all doing well and enjoying your summer as well as your life. Stay positive and never give up!!!!!!!!!!!! Thursday, May 20, 2010 8:54 PM CDT Ok so you all should just get ready to shit your pants but finally after 5.5 years I am in REMISSION !!!! It is crazy. WE are still in disbelief and a little scared that it really isn't true but he Dr. assured me. I have been here before twice but I am never going back. I don't care what the odds say. Remission- thank you to all of you and I love all of you. I couldn't have made it this far without everyone's support. I have to keep up the treatment every three weeks on the trial but there is no active cancer in my body. Hot Damn!!!! Tuesday, May 18, 2010 4:28 PM CDT I have completed the first phase of the trial and have had a PET Scan to see if it is working. I asked for a week off before I start the second phase of this trial. So this past weekend we hooked up the camper and headed to Knoebles for the weekend with our neighbor and a bunch of his buddies from work who were all a bunch of good people. It was nice to get away and let the kids just go nuts. Very tiring for me though but who cares its what keeps me going. Monday, April 26, 2010 4:30 PM CDT I am in the second cycle of the trial and have no idea if it is working or not but I do know that it make sme so tired and drops my counts. I got pretty sick during first cycle so we will see what happens in the 2nd. I hope you are all doing well and wish you all the very best. Take care and live happy and hard. Thursday, April 1, 2010 2:19 PM CDT Happy Easter to everyone! The trial started on Monday, so we shall see what happens. I will try and keep you all updated. Love and happiness to all. Live large and love as much as humanly possible. Friday, March 5, 2010 3:51 PM CST Got my PET/CT results yesterday from the docs in NY. My tumors have shrunk all over my body. It doesn't mean I am in remission but it is still good news. So the chemo kickin my butt was worth it. So now I am waiting for the trial to start still. Hopefully within the next couple weeks it will start. They are letting my body recoup a little bit before we do anything else. If the trial gets delayed or if something happens they want me to go back on the same chemo. So the chemo worked and shrunk all the chemo in my body. The treatment that I am going to start isn't going to be a cure it is going to be more like a maintenance drug to keep the cancer in check. I just hope my body can handle it. It is taking a while for my body to recover from this last round of chemo so I am pretty beat up from all the years of treatment. Oh well, this is a small victory and I am happy for now and will move on and see what comes. Love to all and live large !!!! Monday, February 8, 2010 2:50 PM CST I have not been accepted into the trial yet. I have been getting my butt kicked by chemo. The trial is supposed to be available on March 8th and until then they have had me doing 2 days of chemo every three weeks. Even though I argue with them and do not want chemo at all. They bully me and pressure me into believing that if I stop the chemo that I may have no hope and blah blah blah! I am sick of chemo, it is killing my counts. I went grocery shopping today and just about passed out about 4 times in the store from feeling so lite headed. It is just so frustrating and I want to feel somewhat normal. I am sick of doctors thinking they know me and my body better then I do. I know how I will react to things after doing this crap for 6 years. Espcecially when a doctor does not know my complete history. Becky has started a new job and the girls are doing great with school, basketball, soccer and snowboarding. I hope all is well with all of you and wish you all the very best. Take care and god bless! Monday, January 11, 2010 3:01 PM CST Happy New Year to all of you. Well, I am going for more chemo on Thursday and Friday in NYC. Things are still not where I wish they were. I just wish things were somewhat normal. I hate feeling like crap and not being able to breath normal. I can only imagine that I will be feeling even worse next week after chemo. I wish I could just skip the chemo and wave a magic wand over my head and make this all go away. I am really not feeling the fight that I used to feel. I am sick of my family having to go through all of the crap and I am just plane fed up with all of it. It is starting to affect more and more of my life. Well, I am going to stop for now because I feel like I could just keep going off on being negative and miserable and I don't want to be that way on here. I wish you all a happy new year and hope that you all are doing well. Take care. Sunday, December 27, 2009 9:34 AM CST Went to meet with new doctors on the 23rd of DEcember and the latest PET/CT scan showed large growth in my neck and lungs so they didn't want to start me on the clinical trial until they could shrink the tumors quickly first. They are afraid that they will stop my breathing if I don't. So they started me on chemo again fora couple treatments, but I am so sick. My mom and I had to stay over in NYC so I could get 2 treatments and come home. Thanks mom. The chemo is making me so sick and feel so horrible. There is no way I will be able to handle another round of this chemo. It is killing me. Sorry for the delayed wishes but merry xmas to all of you. I will try and keep this updated if I am feeling up to it. Take care everyone and best wishes and happy holidays. Friday, December 11, 2009 1:12 PM CST Well, I guess it is about time I updated the front page of this and removed the Happy 4th of July picture of the yellow lab. So why not put a picture of our 2 chocolate labs, Harley and Riley in its place. Monday, November 16, 2009 3:36 PM CST Well, I have been doing radiation to get rid of the tumor on my rib and mostly to stop the pain. The shingles have gotten better but are not totally gone yet. The cancer has gotten worse in my body. I can tell by the tumor in my neck which has tripled in size since stopping the clinical trial(thanks). SO I am back to the drawing board trying to figure out what and where to go next. What treatment or trial to move towards. I feel like the doctors are not sure what to do with me anymore because I have tried pretty much everything. I have to do the work myself and push the doctors to keep moving forward and trying to find something to me. That is exhausting. Fighting and having to find something to treat me so I don't just wither away and die. I am down to 135 lbs and pissed and bummed and looking for a little light.
Tuesday, October 20, 2009 12:28 AM CDT Well, like I had said on my previous post I have been kicked out of my trial. So now it is on to whatever might be next. Unfortunately, I have been diagnosed with shingles and with a fractured rib, which was caused by my cancer eating through my bone. Lovely, so not only do I have the pain from the shingles but I also have pain from the broken rib. Life is great. I am also very sick lately. I have been throwing up an aweful lot and not being able to keep anything down. Yesterday I went for a blood transfusion and I go set up radiation and meet with my oncologist on Wednesday. I am going to get some radiation on my rib to kill the cancer so my rib can heal. SSo right now I have no great news to share with everyone. Tuesday, October 13, 2009 2:16 PM CDT CANCER SUCKS !!!!!!!!!!!!!!! My PET Scan and CT scan showed my cancer increased so I have been eliminated from the clinical trial and now I am screwed! Monday, September 28, 2009 12:28 AM CDT I know I am always saying sorry for the length between updates but we have been pretty busy and I seem to always be tired. I save my energy for Becky and the girls. Well, the treatments have been going okay I guess. They make me extremely exhausted. I haven't really noticed any other terrible side effects. I randomly have nauseau(sp?)but not sure what that is from. I am getting a PET and CT on the 8th and 9th of October so we will see if anything is going on from these treatments. I sure as hell hope that they are working because I can not handle this crap much longer. The soreness, stiffness, tiredness, pain etc.... It is getting old real fast. My body is just gone with no resemblence of what it used to look like 6 years ago. I am sick of being stiff, having no muscles and not being able to do simple things like climbing up on a chair. Another new wonderful thing happened this past week...I had a tooth fall out. No it couldn't have been a back one it had to be a front bottom tooth. My teeth and bones are so destroyed from all the chemo and meds that I have been on that my teeth are now falling out and I have no dental insurance.......wonderful !!!! Things just get worse and worse. Sorry to be a bummer but I am pissed and sick and tired of all of this shit. I feel like I am losing the positive edge. Ughhhhh!!!! Sunday, August 30, 2009 5:54 PM CDT So sorry, we have been busy and I have been very tired. The trial did start 2 weeks ago. Tons of driving. I get treatment on a Tuesday and then have to go back the day after and then on the Friday for protocol bloodwork, then go again the followinf Tuesday for bloodwork again and then I have off the rest of the week. Then I go back the next Tuesday for another treatment and testing the following day and friday and then that is one complete cycle. I have to go through 4 cycles so 8 treatments in total. It is making me lose a couple more punds and extremely fatigued, which is tough with all the damn driving to Philly. Sorry, I didn't let everyone know about the clinical trial but we are in and started. The kids are back in school already..booooo!!!! I enjoyed being with them and the summer flew by. I hope you all are doing well and that you all had a great summer. Tuesday, July 28, 2009 2:22 PM CDT Well everyone I hope your summer is going well. We had a wonderful time in Ocean City, MD last week. The kids were so excited to go on a vacation again since we haven't gone on vacation in a couple of years. The kids had a blast. Nice weather and relaxing time for all of us and great to be able for all of us to get to be together by ourselve. Friday, July 3, 2009 8:51 AM CDT When Colleen emailed me in big BOLD letters today to update the site...I figured it must be way over due. We are all okay....Mike is a trooper. People tell me all the time, "he looks good", and he does. As for how he feels, I dont think anyone who has not been through a battle like his can understand, there are ups and downs. All of which he handles amazingly. He's a tough guy. He turns 37 on July 20th....shower him with birthday cards! Monday, June 1, 2009 3:51 PM CDT Hello everyone. I hope everyone is doing well and getting ready for summer. Mya just turned 8 and we had one heck of a party for. The girls are doing great and wrapping up scool as well as softball. Becky is busy with making jewelry still even though Hope Creations is now officially closed and we have everything moved out. She still gets upset about it but I think she misses the social aspect of it with all the wonderful people coming in to visit and chat, but she is moving on to bigger and better things. As for me I am doing okay. I have been feeling really tired and drained lately which always makes me nervous. I have an appointment with Fox Chase in July to see if I will be accepted into the clinical trial or not. Other than that we are just trying to enjoy every minute. I am down a little lately with feeling crappy but that comes with reducing and getting off of the prednisone. Like I said before I hope you all are doing well and I thank you all for your continued support. Take care and god bless.
Friday, April 24, 2009 12:09 AM CDT Sorry for the long delay in updating this site but Caringbridge changed their set up and I could not figure out how to sign in as the author to update the journal. Anyways, things are going okay. I am reducing my prednisone so that I can get into the trial study at Fox Chase. I have been feeling good other than really weak in the legs and arms. I lost so much muscle and strength the last hospital stay but it could always be worse. I just need to get that strength back if at all possible. I got my plurex catheter taken out by going through another surgery....add it to the list of many surgeries and scars. There wasn't really any fluid being drained so there was no sense in keeping it in. A funny thing happened when I went to the surgeon to talk to him about taking it out. He walks in and looks at me and then does a double take and looks at me again. Both times he looked at me he says "you look good, I mean really good" so I said "thank you" of course "so do you". He then says "I didn't expect you to make it out of the hospital". I didn't say anything I just sat there kind of freaking out thinking about how bad I must have really been. I never really thought I was that sick. I mean I felt like crap and don't remember about 2 weeks of my life but I never thought or acknowledge how bad I really was. The power of the mind. Anything is possible. No matter what your circumstances don't ever give up or give in. If my day does come due to this disease I will be pissed but at least I will feel like I gave it my all to try and kick this thing in the ass. Basicly what I am saying is don't ever accept something that you don't want to hear or have happen. Always try your best to make it the outcome that you want. Enough of me on the soapbox....sorry! Monday, March 30, 2009 5:14 PM CDT Hello Everyone,
Sunday, March 22, 2009 2:10 PM CDT Hello everyone. I hope you all are enjoying the spring. I can not wait for the warm weather to come. I hate always being cold. I mean always cold! I have been busy with doctors appointments and trying to get my strength back. My legs are in really sad shape. There are so weak that it is hard to get up steps and lift my body from different positions. They are so skinny that I can touch my thumbs and index fingers together around my upper thigh in a circle. Talk about chicken legs! So it is frustrating not being able to move my legs and support my body the way I am used to but like always it could always be worse. I am still able to go to softball practice with the girls and coach and I have been getting back into doing more and more around the house. Yesterday we took the camper to the campground with the help of Bill and Albee. Thanks guys. The camper is set up and Becky and I both worked on setting up and cleaning up the campsite while the kids ran around and played with the Roe kids like wild animals. Camping starts next weekend so hopefully lots of fresh air will do me some good. Thursday, March 12, 2009 9:43 AM CDT Well I just got out of the hospital again yesterday. I have been in the hospital since Friday the 6th I believe. IT doesn't stop. I was having problems with thinking and energy. I was just blank when I was talking to the girls, my mom and Becky. I just couldn't think and I couldn't see clealry, my blood pressure was very low again etc.... It took them 5 days to figure out what was going on with me. Actually I was the one that said to try putting me back on prednisone to see if it makes a difference since they were not doing anything and I was getting sick of being in the hospital and not being able to focus. I couldn't even watch tv. So the long and short of it is that they realize after testing that my adrenal glands are not functioning anymore, which means my body is no longer making steroids naturally because of my extended use of prednisone. That sucks because prednisone is so bad for you plus I can not get into the clinical trial until I am off of the prednisone, which they are telling me that I will have to wean off of over a very long period of time and my adrenal glands will start making steroids again. But by then my cancer will be raging and my body will be destroyed by these steroids. So anyways, that is why there has not been an update for a while. I have been in the hospital again going crazy. But I am home again and so happy. I hope the good lord will now allow me to start getting better. I have to because softball season is starting and I have to coach. What else would I do! Saturday, February 28, 2009 2:44 PM CST I am home and resting. My feet are so huge and swollen that they are so gross. Becky and my mom are taking good care of me and just trying to get me better. This is unbeleivable. Thank you for all of your support and love and I hope to see you all soon. My typing and brainwork is very slow so I will keep this short. We will update soon. Take care. Tuesday, February 24, 2009 11:12 AM CST Hello Everyone,
Wednesday, February 18, 2009 11:29 PM CST Hey guys..this is Becky.
Wednesday, February 18, 2009 3:16 PM CST From Becky for you all...keep the prayers and positive thinking coming! We are all proving just how powerful prayer really is: Tuesday, February 17, 2009 9:19 AM CST Becky asked me to post this for you guys since she doesn't have access to CaringBridge at the moment.....please keep the whole Machinski family in your prayers:
Monday, February 9, 2009 10:38 AM CST Hello Everyone, Friday, January 30, 2009 7:51 AM CST Happy Birthday Emma!!!! Emma turned 8 last week. I can not believe that my little baby has turned 8 already. Man time flies!! Even when you have cancer time still flies by. Emma is such a beautiful girl who is so damn cute and comes up with the craziest things some times. Damn, I love her so much as well as Kylie and Mya of course. Once again showing me that you really have to stop and smell the roses in life. Enjoy every bit of everything you can. Make the most of every minute you have here on earth. I can not say it enough and yet I still feel like I don't take advantage of every minute I have here. I just feel like my kids are growing so fast that I missing things and not enjoying it enough because it is happening so fast. So enjoy !!!!!!!
Wednesday, January 14, 2009 4:02 PM CST Well, I did a week of chemo and was supposed to get more today but my blood counts were too low. Particularly my white counts which were 1.4. If I were to get more chemo today I could possibly get deathly sick. So instead of getting more chemo I got to get a shot of neulasta(yipee) which forces your body to make white blood cells, which in itself is quite a fun experience. It forces your bigger soft bone areas to create white blood cells when it doesn't want to, which can be quite the fun and painful experience. I haven't had to experience this in quite some time and am so very excited about it.....not !!!!!! I know I should just shut up and suck it up because it could ALWAYS be worse!! I have been tired and crappy feeling lately but still pluggin away and all things considered I should be happy to be breathing and hangin with Becky and the girls. Thursday, January 8, 2009 2:15 PM CST Well there has been quite a bit that has gone on since my last update. Most importantly Christmas and New Years has passed. So happy new year to all of you and I hope that your holidays were great and as blessed as ours. We had a great time with friends and family that visited over the holidays. Thanks for all the visitors it was great. Wednesday, December 24, 2008 8:39 AM CST I am going to try and do this quickly and will update it more in depth later. Sorry for the short update but I have to get ready to go to Fox Chase. I just go home from the hospital last night at about 7:00 pm after being in there for the past 5 days. It wasn't a pleasant stay but at least I home for christmas. I was in the hospital for the draining of the fluid from the sack around my heart. This procedure is called a pericardial window, Basicly they cut a hole in my stomach below my sternum and went in and cut the sack around my heart open and let it drain for a few days, so another scar added to my collection. Monday, December 15, 2008 5:23 PM CST Happy Holidays Everyone!
Thursday, December 11, 2008 10:49 AM CST Hello to everyone. It has been a while since there has been an update and I apologize. I hope everyone had a wonderful Thanksgiving and are enjoying the holiday season. I know we had a great Thanksgiving. Thank you to all of you for your well wishes and continued support. I wish I had better news for all of you but things are proggressively getting worse with my condition. My lungs are a total mess and I am having such a hard time breathing. Sleeping has almost been impossible lately due to not being able to breath while laying down and the pain I have been having in my chest won't even go away with pain meds. I have also been getting more lymphnodes popping up almost on a daily basis. The one on my left side of my neck has gotten so big that when I turn my head a certain way it cuts off my windpipe....a lovely feeling. Wednesday, November 19, 2008 9:45 AM CST Hi everybody ! I hope you are all doing well. I also hope that you all have a wonderful Thanksgiving and have safe travels for thos of you who may be traveling.
Saturday, November 8, 2008 11:13 AM CST I hope everyone is doing well. We have been taking things one day at a time and enjoying every minute that we have. Trying to wrap up the soccer season as the girls all start basketball. It never stops as you all know, but thank goodness because if they all didn't keep me going who knows where we would be. So every time you stop to think about how much you have to do or somewhere to go or take kids or whatever be grateful that you have that in your life. Don't take for granted the fact that you have that and that you can still do it. That is the most important part, remembering that you are still here and able to be with the ones you love and do the things that they love. Monday, October 27, 2008 6:31 PM CDT Hi everybody ! Thank you so much for all of your support lately. It has meant the world to me. My doctors have started me on the wonderful drug of prednisone(steroids) again. They actually put me on it about a week ago and I have already gained about 6 pounds. I may be getting my chipmunk look (as my girls call me) back again some time soon. The prednisone really puffs you up and gives you one heck of an appetite. It has allowed me to start getting out of the house and actually doing stuff again. The only problem is that it is all just a mask as to what is really going on. It really doesn't help with getting rid of or shrinking any of my cancer. At least I can try and put some weight back on this huge 135 lb. frame of mine before I start some kind of treatment. It is covering up the real symptoms but I am enjoying the time that I have with Becky and the girls and doing stuff around the house. Tuesday, October 7, 2008 8:46 AM CDT Hello,
Wednesday, September 24, 2008 12:35 AM CDT Hmmm...an update. Mike is still very weak but has been getting some energy back since the surgery 2 weeks ago. He is still on a 100 at free diet, yet we need to get 2000 calories in him a day. This has been a very difficult task since he vomits often, is nausious always and hates the food we are feeding him. Not to mention, it is hard to get 2000 calories out of fat free foods! His wieght is down to 137 lbs and he is very frail looking. Actually Mike, your totally HOT! Always were, always will be!
Thursday, September 18, 2008 12:56 AM CDT Well, things are going slow. I have been in extreme pain since the surgery but I think that I am slowly getting better day by day. All thanks to Becky, my sister Katy and my mom. They have all taken such good care of me. I really don't know what I would have done without all of them. This whole procedure really kicked my ass to put it bluntly. It has been so painful and exhausting. It has also been realy hard on Becky as well and I wish that this would all just go away for everyone involved. This really had us concerned because it was so physically hard on me and it really made it seem like the cancer had really gotten ahold of me. I need to recover from this surgery and then we will focus on doing something about this cancer, whether it is chemo or a clinical trial with monoclonal anti-bodies. Wednesday, September 10, 2008 7:37 AM CDT I am not sure really where to start today and I am very exhausted mentally and physically, but luckily I copied Mike's file and the surgeons notes and I can be a big cheater and just write to you what I copied...
Friday, September 5, 2008 3:00 pm Hello Everyone, Saturday, August 30, 2008 6:52 PM CDT Since my last post I have had my chest cavity drained twice more. Both times they drained 1800 ml, which is almost exactly a 2 litre bottle. I just got home from getting it done the third time. My oncologist suggested that I get surgery to either put in a tube so I would be able to drain it myself at home or I could have a more evasive surgery that they would try and eliminate the fluids from being produced. If they do this they would basicly glue the 2 layers of my lung together to prevent them from rubbing together and producing fluids. Not real sure how it works, but I have an appointment with the surgeon on wednesday to discuss. The fluid basicly is crushing my right lung and makes me feel extremely uncomfortable. The whole thing just sucks. It makes me feel tired and extremely painful and crampy like everything in my chest is being crushed. After this get taken care of we will figure out what the heck to do about treatment because my cancer has grown quite a bit and is noticebly larger. Thank you so much again for all of your support and wish you all well. Take care and talk to you soon.
Tuesday, August 19, 2008 10:58 AM CDT Well, that was fun ! Nothing like having a needle shoved in between 2 of your ribs and then poked into the membrane around your lung....fun !!! They pulled out 1500 ml, which is the equivalent of 3/4 of a 2 litre bottle but they had to leave a couple hundred ml in there because if they took too much my lung would be more likely to collapse. That is a ton of liquid. I can not believe that that was all in there and that there is more still. Hopefully it doesn't come back very fast. My right lung must have had no room to expaand at all. I can breath a little better but I can feel my lung rubbing against my ribs when the lung expands. It is a very weird feeliing. Thank you for all of your support. I still can not believe this thing just keeps going on and on and getting worse. The girls were gone this past week in New England so I spend alot of time alone thinking, which probably wasn't a very good idea. Needless to say I was somewhat sad thinking about the morbid reality of the latest development. I am just so pissed, sad and upset. I don't know what to do. I did double my weekly treatments of Vitamin C for as long as it can be afforded and after my results come back on the fluids that were in my lung I will see my three docs and see what ideas that they might have. I hope they have something good. I am so confused as to what to do. Thanks again for the support and we will keep you updated. Wednesday, August 13, 2008 1:17 PM CDT Why can't I just shake this damn shit!!!!! I was afraid of about what I am going to share with you all. About a month or so ago I started feeling a little worse, short of breath, short of energy etc....We went to the pocono 500 with a bunch of great friends and I barely had the energy to climb up the stairs to my seat, but in spite of that I had a wonderful time with everyone. The whole weekend was awesome. The Monday after the race I went and finally had bloodwork done and then on Tuesday my three girls and I headed to Maryland with my good buddy Billy to visit a couple of friends of his, which was a blast. Unfortunately on the way to Maryland, actually as we were going through the Baltimore Harbor Tunnel I received a phone call telling me that my hemoglobin was a 7 and that I needed a blood transfusion ASAP. I said well that is not possible we are in Maryland and not coming back for a couple of days. So I got back and had my transfusion on Friday and then had a Catscan on Monday. I had a doctors appt. on Tuesday morning to receive the results which were not good. Thursday, July 17, 2008 5:45 PM CDT Hello all!!! I hope you all are doing well. This summer has been busy and seems to be flying by. Time in general seems to go by so fast in general. I was looking at a picture on our dresser the other day and I can not believe how little the girls were when we moved here. They were all in the driveway on bikes and tricycles looking so young. It made me think about how fast they have grown and how much they have grown up with cancer in their lives. They were basicly 2,4 and 6 when we moved to PA. I wish I could store their childhood in a bottle and hold it close to me forever. They are growing up so fast and I feel like I am missing it with always worrying about being sick and feeling like crap. They are amazing girls as hard as I am on them they are pretty damn good kids for all that they have been through. Becky and I just wonder where the time has gone sometimes, but so don't we all. I just want the very best for the girls and for Becky in this world. They all deserve so much for having to deal with all the crap they have had to deal with in having a sick dad/husband. Not always having the money to always do what they want and to have to worry about me and our life all the time instead of just being able to just live and enjoy life to the fullest. Like I said I want the very best in life for all of them and if I leave this place I hope it all comes to them 100 fold. They deserve happiness, wealth, relaxation and 150% enjoyment out of life. For Becky and the girls, who I can never repay for everything that they do and bring to me. I love you (Becky, Kylie, Mya and Emma)guys more than I could ever say and always remember that no matter where I am physically that I will always love you and be in your heart trying to lead you to always do the right things in life. Sorry for going off on a tangent when really all I wanted to do was update you all with what has been going on. Monday, June 16, 2008 12:47 AM CDT Wow..long time since the last update...sorry guys! I will start with the simple things in our lives, the girls are great! They are healthy, happy and out of school for the summer! I am watching them play wiffle ball outside, in tank tops, filthy dirty, and laughing...having fun with their friends! I am also doing well...I feel good and the store is holding it's own.
Friday, June 13, 2008 1:57 PM CDT I hope you all are enjoying your summers so far. I wish you all the fun and joy this summer. There is nothing better than spending time with your family during the summer months in the sun and by the water. We have been doing okay. The girls finished school with flying colors and are getting ready for a fun summer in the sun. I am so proud of them and how well they do in school. Becky has been working her butt off at the store. The store looks better and better every day. She continues to increase the amount of items and services that we offer at the store. I am really proud of her and how she has made Hope Creations a place where people love to come and bead, shop and just hang out. People drive farther to come to our store because the atmosphere is nicer and friendlier than their local bead shop....so that says alot about the shop. Friday, May 16, 2008 12:13 AM CDT Sorry for the delay in posting a new message but things have kind of been hectic lately. I met with my radiation oncologist, Dr. Blauth last Friday and she suggested that I get radiation to the two areas on my ribs to eliminate the pain. The spot on my 5th rib on my right side is eating away an area of my ribs and the spot on my 11th rib on my left backside is sending pain out to my side because it is effecting my nerves over there. I guess like everything it could always be worse. She has said that she may be able to pinpont the radiation but it could still effect the rest of my body. I am worried about it hitting other internal parts and zapping my energy like before. She is leaving it up to me as to when I do the radiation. I may wait until after the girls softball season is over so it doesn't effect me being able to coach. So we will see. Thank for all of your love, prayers and support. I will let everyone know when I decide to do the radiation, which I really don't want to. Monday, May 5, 2008 7:13 PM CDT Hi everyone, Wednesday, April 30, 2008 9:09 AM CDT Well, I am so sorry for venting on here at all. I just needed the people that are doing the gossiping to know that we have heard what is going on and you have succeeded in making us feel like crap. You have accomplished your job. Becky can not stop crying and wondering why and who. When this whole thing started Becky and I felt so guilty that we were chosen for this because there are so many people out there that have it worse and we realize that and that is why we want to do something about it, which we are in the midst of. We are setting up a non-profit to benefit local families. To give in our own backyard. We will not let this negative chatter stop us from accomplishing our goals. Again, to everyone I am sorry but I was hurt and I was even more hurt to see Becky cry for the last couple of days. She has sacrificed so much for me and the family that it is not fair for her to feel like this one bit. Not at all !!! It is rediculous.
Monday, April 28, 2008 4:32 PM CDT It is so unfortunate that I have to write this at all and I can not believe how selfish and shallow that people can be. I hope that the people that are doing what I am about to address read all of this. Feel free to come in to the shop, call me or come by the house to discuss face to face because you have hurt my family and I beyond belief. Sunday, April 20, 2008 3:12 PM CDT Thank you all so much for all of your incredible support. The show was so much fun to watch and to have some of our friends and family here to watch it with us. It was great but I wish all of you could have seen more of what we actually did and the fun and ecxcitement that we experienced. There was alot cut out of all of the filming that they did do. We wish you all could see and enjoy all that we did because all of you have been here through everything supporting us and we want you to have enjoyment as well because without all of you including my wife and kids I wouldn't be here today. You are amazing people and there will never be a way I could pay you all back for the amazing support you have all given us over the years. Thank you. Tuesday, April 8, 2008 9:12 PM CDT Hello everyone.....it is amazing to think that over three years ago, I started this blog for friends and family to stay updated and now it has had as many visits as it has. Monday, April 7, 2008 4:59 PM CDT Oh my gosh guys...........so many awesome guest entries! Thank you! We had friends and family over last night to watch the Big Give and it was just .....so cool! Thank you again for all your support! It was the absolute best experience and Brandi and Cameron (our contestants) were angels. It was awesome! Thanks for cheering Mike on!
Friday, March 28, 2008 10:49 AM CDT Well it is Friday and the weekend is upon us. Hopefully the weather will be nice and we can all enjoy the outdoors this weekend. I hope everyone had a great Easter and enjoyed spending time with their families. I know we had a blast at my sister Katy's house just hanging out and relaxing outside by the fire all day while the kids enjoyed their trampoline all day long. It is amazing how long they can bounce on those things. We also got to spend time with my brother-in-law Phil's brother Chris and his daughter Reegan(sp?). That was alot of fun and I enjoyed seeing Chris who is a great guy to sit and shoot the breeze with. He and his girlfriend actually own a peanut butter company that makes amazing organic peanut butters. They are packed with protein and not all the bad stuff that is in all other peanut butters. They have it with flax seed, cranberries, some with chocolate, almond and so on. We got 4 jars that my sister Katy bought for us and Becky and I have been eating it so much that we are almost done with 2 jars and we haven't even had it a week. Check out his website www.saratogapeanutbutterco.com or yopeanutbutter.com . The stuff rocks and they are also going to be on QVC soon. The stuff is a healthy thing to ad to your diet...so good. Sorry about that tangent but I am amazed by that stuff and wanted to tell you all about it. Monday, March 3, 2008 7:41 AM CST Hey Guys!
Wednesday, February 20, 2008 8:19 AM CST Hello Everyone!
Saturday, February 9, 2008 8:30 PM CST Mike came home this afternoon. He is still not feeling well. They gave him a total of 4 shots of Neupogen during his hospital stay and this raised his white blood counts. He has a visit at the docs on Wednesday to take his blood again and hopefully they'll stay up. Thursday, February 7, 2008 9:15 PM CST Well, Mike is still in the hospital. He is frustrated and nervous. They are keeping him in because his blood counts are still very low. His WBC is a 1, his ANC is .7 and his platelets are only at 100. They gave him a shot of Neupogen tonight to try and start to raise his WBC. The problem with the Neupogen is that it gives him bone pain and he already gets enough bone pain from the cancer in his bones. He takes 60 mg of morphine three times a day, as usual, but is still in a good deal of pain.
Wednesday, February 6, 2008 8:27 PM CST Hi Everyone,
Thursday, January 24, 2008 5:57 PM CST Oh My GOD!!!!!!!!!!!!!!!!!!!! This is NOT going to be a journal about cancer or sickness today.......instead it is a HUGE moment for these proud Machinski parents....our ten year old daughter, Kylie, keeps a sketchbook with her fashion drawings, clips swatches of fabric for it and just finished her first dress....so we spoke to the folks at the Baum School of Art in Allentown and Kylie who is too young (by 3 years) to be in their program was accepted by the teacher there to join the class with all other teenagers!!!!!!!!!! The teacher is a very established designer (her site is www.ptakcouture.com) so our fifth grader is a future designer & based on the teacher (Pamela Ptak)taking her into this class when she is 3 years younger than the required age.....we are pretty proud of her! If you see Kylie....Congratulate her!
Friday, January 11, 2008 11:50 pm CHECK OUT THE NEW PHOTO ALBUM
Monday, January 7, 2008 8:36 PM CST CHECK OUT THE NEW PHOTO ALBUM !!!
I had my second PET/CT scan two weeks ago and just got my results a few days ago and I am thankfully still in remission. This time they notice how bad of shaoe my lungs are in. They noticed the severe scarring in my left lung which was caused by the fungal pneumonia that I had way back in 2005 or 2006. I also have some fluid in my right lung so despite my lung and breathing problems I am very happy to be in remission and enjoying life with Becky and the girls. Softball will be over after one more tournament this weekend and soccer has already started. So never a moment to sit down but that is what keeps me mobile because when I sit still I get stiff and I find it hard to move so keeping moving is great and the girls keep me on my toes. I love every minute of it. Although, the kids being back in school will allow me to work on writing my book that will share my whole journey and hopefully be inspirational to someone or be comforting to someone to let them know that someone has been where they are and that they can make it so keep fighting. Anyways, I hope you all are doing well and I wish you all the best. Take care and god bless. Live hard and failure is not an option. Never never give up.
The trial I am on is SGN35, it is a monoclonal antiobody mixed with a little chemo and I am seeing Dr. Zane who is working with Dr. Owen O'Connor at the Langone Cancer Center at NYU.
I have been getting treatments every three weeks still, but my breathing is getting worse. I don't know if it is all the scar tissue that has accumulated over the years or if it is fluids or what. It just seems to get harder and harder, which makes it hard to be as active as I want to be. If you get winded bowling then you know its bad or your really old. I went bowling with my brother Chuck and his three kids as well as Mya this past weekend and after throwing two balls I would have to sit and catch my breath. My hip was hurting as well and it really hurt the next day and still does today. I think I will be getting a hip replacement sometime down the road. It is pretty bad. But all and all I am ALIVE and enjoying life, with a little pain. I can handle it though because as I have always said, it can always be worse.
I am busy with the girls with softball still and then soccer starts in the middle of August so there is now stopping. Otherwise I get really stiff and don't want to do a thing. Busy busy! Becky is busy trying to make silversilk happen, which it slowly is. She is doing an amazing job with that company and I know her hard work will make that company a success. Well, thats all for now everyone. I hope this finds you all in good health and in happiness. I hope you are enjoying your summer with loved ones and that you do something every day that makes you realize how special life really is. Take care and god bless. Live large and never give up !
Mike
The second phase should have a lot less needles involved and it starts on Thursday. I also get the PET scan results so cross your fingers, your toes and whatever else you can think of.
the kids are doing amazing in school and are counting down the days until it is over. I am counting the days that I am still lucky enough to be on this earth. Becky and the girls as well as my Mom make sure that I am going no where. I hope you all are doing well and keep on keepin on. God bless, much love and always remain happy because things always have a sunnier side.
Mike
Love,
Mike
Mike
Mike
So as most of you know from facebook I have found this doctor at NYU. Dr. Owen O'Connor is from what I have read the premiere doctor in dealing with recurrent lymphomas. I got his name from our friends Don and Tess McGowan who have their own battle with cancer. Don is in remission and staying in remission forever !!!! Nothing but positive vibes Don. So what I have read about this doctor has been nothing but awesome. So I called his office and they got me in the next Wednesday, which was two days ago. I met with him and fellow doctor, Dr. Zane. Their were awesome and said they have lots of medicine with promise for Hodgkins right now so I am hopefully going to start something that they have on the 23 of December or there about. So hopefully I have stayed alive long enough for me to come across these 2 wonderfully intelligent doctors to save my life. I am looking to them for a miracle. This could be my christmas gift. So anyways thats where I stand with treatment as of now. The cancer is definitely getting worse by the day, the tumor in my neck is so big now that it is starting to interfere with my adams apple and my ability to swallow. So this came at the right time because I need something.
It is also Christmas time so I must wish you all the happiest of holidays and may all your days be filled with joy and happiness. Merry Christmas and happy holidays to everyone. Thank you for getting me through another year to be able to celebrate another Christmas with my wonderful family. Speaking of my family, we are leaving on Monday to go on a cruise that my mother is taking us all on for her 75th birthday. I know that sounds odd, her taking all of us when it is her birthday, but this has always been a dream of hers...to take all of her kids and their kids on a cruise. I think there is 25 of us going on a cruise to the Bahamas....so warm weather..yeah !!!! So thank you to my mother and happy birthday mom, you are the best and you are amazing how you keep going and going just like the energizer bunny. She never stops, she is either here or at my sisters house or running here or there. I guess thats why she doesn't look a day over 60.
Well, enough for now. Happy Holidays, Merry Christmas and all that happy horseshit. I truely am thankful to all of you for your continued love and support. Thanks for all that you do and I wish you all the very best and enjoy your family over the holiday and make sure you tell each and every one of them how much you love them personally, because life is too short not to. Life can be so good if you let it be. God bless and take care.
Love,
Mike
The light is Becky and the girls. They are all doing so great. I love them all so very much and would not be here without them. God bless them, love them and hold them in your heart because they have been through more than I and they don't deserve it. They deserve a normal life of health and happiness and for all of their dreams to come true. I love them so much that it fills my heart with pain. Thanks to them. Thanks to my mom and thanks to all of you. Take care and god bless.
Happy Thanksgiving and please be think about all the little things that you should be thankful for from just waking up in the morning and feeling decent and being alive to have wonderful family and friends or just having oxygen to breath. Think about how bad things could be and be thankful for every minute that they are not. God bless!!!
Love,
Mike
Becky and the girls are doing awesome as always. I just wish I was doing awesome so I could join them. It is so frustrating not to be able to participate in everything that you want to especially when you are used to being so athletic and active and participating with them. Anwyays, they are great, they are doing awesome in school as well as soccer right now. Becky is doing great with her jewelry and her job with Silver Silk. The company is growing in leaps and bounds I think and alot of that has to do with Becky's talents in jewelry as well as creative designs and contacts. Check it out: silversilkjewelry.com Becky keeps us all going and this house running. I love you Becky.
Well, everyone. Thanks again for all your thoughts and prayers. Take care and talk to you all soon.
Mike
Sorry for the short update but I am pissed and so upset that I can not think right now and will update more later but as for now I don't know where to turn.
On a much much brighter note my friend Don is getting out of the hospital after undergoing transplant for non-hodgkins and everything is going well for him so please say praise to god and also say a prayer for Don's continued improvement on his road to good health. God bless you Don and Tess and congrats. Peace and love to your whole family. Stay stronger brother and keep on kickin ass!!!
I would also like to send my love to my mom who has been a huge help to Becky and I, but has unfortunately lost her best friend in a car accident over this past weekend. Our deepest condolenses go out to Jenny's family.
I hope you and your families are all doing well. Our girls are doing awesome in school and in soccer. I love them so much and want to bottle this time up because they seem to be growing so fast. Becky is also doing amazing with her Jewelry designs and business. Her business that she joined is going to be huge and I know Becky is going to be a famous jewelry artist so you all better get it while its hot and before it is too hot to get your hands on. She is so talented and amazing just don't leave her in Paris by herself...ha-ha ! silversilkjewelry.com
Take care everyone. I wish you all the best and hope that you all are enjoying life.
Love,
Mike
Becky is doing great and off to Paris for work to try and get the new jewelry business flying, which I think John(her boss) and her are well on their way to doing. Thanks again everyone, take care and I wish you all the very best. Enjoy life my friends and don't be afraid to spread love and kindness.
Love,
Mike
I have heard about the clinical trial at Fox Chase and it looks like I am in as long as I pass the remaining tests. I had bloodwork today and am getting a PET/CT on Thursday and meeting with Fox Chase on August 12th and hopefully starting the treatment the following week. I only hope that it works and that the side effects don't kill me. There are only 4 people in the study so far and 2 of them are responding well and 2 of them it is not working. SO I am keeping my fingers crossed.
Thanks for all of your continued support. Things have slowly gotten worse but hopefully this will work. Thanks again and I hope you all enjoy the rest of your summer. Take care, god bless and enjoy every minute you have.
Mike
On July 15th, we go down to Fox Chase for the initial visit of his new clinical trial. He has been waiting awhile for this. He is off (almost off) his predisone and he is vomiting often again and totally exhausted so all our eggs are really in this basket. We can only pray that they did read all his file and we wont get down there and get shut down again. He is also concerned that he will get denied because the bulky disease that loves his neck so much is back.
I booked us a week at Ocean City, MD for the week of his birthday....nothing better than a week at the beach to make everyone feel better!
As for the girls, Mya is hard core into softball. She loved playing for the local travel team this spring, just took a week camp at Lehigh University. Now, she has a pitching coach coming up to the house and at the end of the month, I would like to bring her up to RI for pitching clinic up there (thanks Cort!). Mike wants her to try out for Allentown's fall travel team. Kylie is enjoying the summer, goofing off and growing an inch per day! Emma is my lazy girl, she goes with the flow and loves being with eithier her best friend, Angie or playing in the pool with her other best bud, Gabby.
Thank you for checking in on us!
Love,
Becky
Mike
On to Becky and Hope Creations. If you have not heard we are closing Hope Creations unfortunately. Becky has done a wonderful job with the store and has another opportunity that has presented itself to her that is going to work better for us as a family. She is going to be making jewelry out of a studio at the house. She will be able to spend more time at home with us and not have the hassle of the store. I am so proud of her and how well she did with the store. It will be sad not having the business because it was so much more that just a business. It was a social thing. I mean we have met so many wonderful people via the store that are part of our lives now and we have done so many wonderful things through the store that we would have not been able to do without it. It is a sad day but at the same time a great day for Becky's jewelry design and production career. Thank you to all of you that have supported Hope Creations through your business and your friendship. There is also even better news....someone approached Becky asking to buy Hope Creations after we had started the liquidation and the sale has gone through. Hope Creation will still be around but at a different location. We think they are planning on opening in June. So Hope Creation will still be your local bead store and maybe Becky will be teaching a class there every once in a while.Great job Becky I am so proud of you and love you!!!
I am trying to get over being sick for the last couple days. Doing nothing but throwing up. I hope it is just a bug or food poisoning and not the cancer. The girls are doing great. Mya and Emma are busy with softball and Kylie is working on her music and becoming a young girl. I love them so much and don't think I would be here if it wasn't for them as well as Becky. I should say I know I wouldn't be here without them. Well, take care, thank you for all of your support and never give up or give in! Fight your ass off for what you believe in and what you want. Failure is not an option at any time. I love you guys. Damn, I write so much I should write a book. Sorry to bore you all with my jibberish(sp?). Talk to you soon.
Mike
Sorry the site was down for a few days. I really have no idea what happened...I called Tech Support and just had the password removed. Hopefully the "Machinski Hater" fan club has ceased and we can keep it an open site again.
Mike is okay...we love you guys...sorry we got ya nervous. Although February & March were scary monthes with his hospital stays, he seems to be having a better past couple of weeks.
We were at the campground this weekend (Boulder Woods in Green Lane) and the camper is all set up for it's seasonal stay, thanks to the help of all the fellas there. The girls absolutely LOVE it there and Mike and I get to really relax.
Mike has a visit this week with his Thorastic surgeon, hopefully he can get his drain in his lung pulled. I have been playing Nurse Becky and draining it myself (home care showed me how) and so far, only little bits of fluid come out at a time.
So, he seems to be stable. I wont say good because then everyone seems to think he's in remission...I wish he was. But he is doing good...he is getting up in the morning, getting dressed and doing what his body will allow in a day.
The girls are great...awesome grades..and I seem to be doing more design work for a manuafactorer in NJ, so I am considering closing the bead shop and getting a paid job.
We love you all. Thanks for caring!
Becky
The home health nurse has been coming about once a week to take care of my plurex catheter that is in my lung. There hasn't really been any fluid coming out when she drains it so I guess that is a good thing. Becky has now started taking care of it as far as draining it and changing the bandage. They may take it out all together when I go see my surgeon next week. Other than that there are still some other things going on that have me concerned but the tumors in my neck have definitely gotten smaller although they are still there. I am slowly getting some strength back which is another good thing. Whether or not I will be able to get back to where I was I don't know. I can only try and stay positive and enjoy everything that Becky, the girls and I can do together in the mean time.
Becky and I are celebrating our 11th wedding anniversary tomorrow(Monday March 23) so happy anniversary Becky. Thanks for all that you do, have done and will do for the kids and I. I love you and wish nothing but the best for you for now and forever.
Well, like I said I hope you all are enjoying the start of spring and are becoming more and more positive with the brighter warmer weather that is upon us. Live life as large as you can. Thank you again. Take care, much love and god bless.
Love,
Mike
Sorry for not updating and for being down but these last 2 hospital stays really kicked my butt more than any other of my visits have both physically and mentally. It is taking me a while to get back on my feet. But of course you all have been here for us supporting us through the whole thing and that I thank all of you for again from the bottom of my heart. And to the southern Everett's I thank you for my gift. I received it yesterday when I got home from the hospital, which was nice to have a gift waiting for me. I will get a picture of it on here eventually. So thank you very much! Even though I don't feel like very much like Rocky right now I will try and get that fight and energy back. With everyones help on here I am sure I will get it back eventually. Thanks again to everyone for your continuous support and love. We wouldn't be getting through this the way we have without all of you. Keep the faith and strength in all that you do and everything will be fine. Thank you and much love.
Love,
Mike
Love,
Mike
I am so sorry to leave you hanging for a few days...I am just sitting down, back at Hope Creations (finally) and trying to catch my breath! Tiff has had this place completely under control and my mom has been great with the kids, as well as my family coming up to help. Katy, Mike's mom (Mimi) and I are juggling sleepovers at the hospital still, to help Mike.
The man seriously has Super Powers. I am not even bullshitting. You would have had to see how sick he was to believe this come back.
Mike>>>>> your amazing.
He is still in the hospital, but out of ICU. He is now on the Cancer Floor (7C) of Lehigh Valley Hospital in Allentown. His blood counts are coming back up, with the help of "Neupogen", but we will take it any way we can get it! The Infectious Disease Doctors finally took him off of the anti-fungal antibiotic that totally made him trip out. He was so out of it from that one med. He was seeing things, ws dillusional and had such hillusinations from the anti-fungal! It was funny to a point, but I was starting to get nervous that the disease had spread to his brain. Now that he is off of it, he is much much better. AND>>>> I now have enough crazy stories of things he said while on that medicine, to hold it over his head for ten lifetimes!! Or atleast have alot of fun busting his chops about how he got mad at me that I was not getting him dressed in his tux for the Oscars. He insisted that we had fourth row seats and was pissed at me that Mya and Emma were ahead of us in line to get in! He thought we should all walk down the red carpet together! LOL
Mike is still on antibiotics for the bacterial infection and septis, as well as pneumonia, but he is truly starting to get better. He can sit in a chair now and can walk to the bathroom with help. He isnt sleeping as much and his blood pressure is back to normal.
I never thought that I would be writing that he recovered from tnis one....he truly has super powers behind him...he is our SUPERMAN! We love you, Mike!!!!!!!!! Your an animal...you define "FIGHTER"!
The Blood Drive in honor of Mike yesterday was AWESOME!!! We had 76 people turn out to donate blood...some even gave double! WOW! Thank you so much everyone for coming out! It was a super successful event and helped to locally restock out Miller-Keystone Blood Bank! I am just blown away by how awesome people are! Thank you..Thank you...Thankyou EVERYONE! Even all the sodas and baked goods that were donated to keep people hydrated during the event were fabulous! Love you all!!!!!!!!!!!!!!
Thanks so much for all your cards and prayers! I love our friends..I love you guys. It is amazing how you pull together to help us...you rock! Thanks so much!! Honestly, your awesome!
Love,
Becky
Thanks Allyson for keeping everyone posted for me. I could not sleep tonight, so I thought I would hop on here and post again.
I am sad. I am tired. And, sad. Yes, the tube is out..but there really is no other good news. He had diahrea ALL day and he is bed bound. He is barely awake and not very coherent when he is. He has had a 102 fever all day, he is septic and his white bllod count is a 0.
Google Neutropenic or neutropenia with septis. It is not pretty.
I know everyone is praying...THANK YOU. We need to pray for his pain to reside.
I will be back at 9 tommorrow morning when the nurses allow me back into ICU. I will continue to email Allyson and have her keep you posted.
Love,
Becky
Hey Everyone,
Thank you so much for all your love and support. Things have taken a hell of a turn this past week, but hopefully we can get back on track. I often joke that Mike is "Superman" and that is because I truly feel like he has Super powers or at least a Super "Power" behind him and guiding him through.
I can not lie, this week has been our scariest yet. I thought we were going to loose him on Monday. The messed up thing about that is that only two days before, he was at the girls basketball game and driving around Allentown. Things change and process so frequently and unexpectedly with Mikes disease.
They removed Mike’s ventilator last night at 5:30. He is now breathing on his own, which was the first major sigh of relief. Next, he is maintaining a decent blood pressure on his own, without the help of blood pressure meds. These are two good things.
Now COLLEEN, keep the HOPE but please know everyone, that we are still so far from out of the woods. I am not being negative, just passing on what the docs have said.....and this is what is still up............
Mike has E-coli..
It is a type of bacteria in his blood that has caused him a terrible case of blood poisoning. Mike’s blood counts are still at a zero. He is experiencing high fevers and has bad diarrhea. He is barely coherent and if this does not improve, he will need a brain CT.
Mike is being treated at the ICU still and they are hoping to move him to the Oncology floor in the next 24 hours.
His mom, sister Katy and I are here all the time. My dad is here in the mornings and then is taking care of the girls. We are all doing well. My mom is also visiting and helping with kids. Thank you so much for all your kind emails, texts, FB posts and calls. We appreciate it all. We are in need of nothing...only positive vibes & prayers.
Mike can only have family visitors and it is very limited...not to mention that he is not coherent, so no visitors please. Although we want you all to know we love you and appreciate the thoughts. He is also neutropenic right now and at high risk of infection. We have to wear a mask the whole time we are in here...I am starting to get nauseous smelling my own breath all day!!
All our love and thanks,
Becky
Here is the jist of what has happened over the past few days......
On Friday night, Mike begin to have stomach pains and pain in the right side of his chest. We did not think to much more of it because he is in pain frequently and he had just had chemo on Wednesday. So, on Friday, he went into the cancer center and had a shot of Neulasta to help raise his WBC and just felt nausios but rested the day. On Saturday, he was feeling very lite headed and weak. He pushed himself and brought the girls to Kylie's basketball game then to a Valentines dinner while I worked up at mtn. When I got home Saturday night, he said he felt like he was going to pass out. He got the chills very bad and proceded to have a terrible night on Saturday. He was up ev ery 30 minutes with diahrea. And terrible stomach pain. We got nervous that he caught the bug that I had or was maybe having real bad after effects from the chemo.
On Sunday morning, it was clear he had to be admitted. His diahrea had gotten bloody, his face was white, his vision was blurry, he could not get up or walk at all on his own and his speech was very mummbled.
I called his oncology office and luckily, his oncologist, Dr. Friedman was the one "on call". I told him what I just told you and he told me that we needed to b y pass the ER and that he was calling admitting. Minutes later, they called me and Mike had a room on 7C, the "Cancer Floor" at LVH. We had him in his hospital bed a little before 10 am Sunday morning and I just Thank God we didn't wait any longer to get him in. He was flailing around on his bed and his pain was intense. They first gave him 10ml of IV injected morphine and it seemed to only take the edge off...then 2 hours later, when he was allowed more and begging for it, they gave him another 10 ml. An hour later, 5 ml more, Ativan, he had a few bags of IV fluids and nausia meds. At this point, his breathing got heavy and he had to be moved to I.C.U.
He had a chest X-ray and "the team" said that it looked like pneumonia, but he was also full of fluid, scar tissue and cancer, so it made reading the Chest X-ray and the Cat Scan very difficult.
They had Mimi (his mom), Mya and I leave about 9:30 on Sunday night. I got back here around 9 or 10 Monday and was swarmed with doctors. The night had apparently taken a terrible turn and he was unable to breath much on his own. They had put him on oxygen and several different doctors had conclusions. First, Infectios disease found from his cultures and the study of his blood that he was Septic and has blood poisening. They must have had to re-assure me abou a thousand times that it was not from the "bug" that the kids and I had, but he had a 0 WBC e ven with his hav ing the Neuolasta shot on Friday. The doc said that Mike has a blood infection that is potentially very fatal and the next 24 to 48 hrs are critical. Then the big guns came in, Dr Swerc. He has possibly the worst bed side manner, but is a highly respected thorastic surgeon and Mike and I think VERY highly of him. He told us that he had been called in because Mikes tests showed he had a lot of fluid around his heart again, as well as in his lungs. Swerc said that they needed to somehow relieve pressure so that Mike was able to breath better. The problem we then ran into was a few....First, his blood pressure had been EXTREMELY LOW since we had gotten into the hospital. They could not get him above 60 over 30 .....at one point it was 60 over 22 which is dangerously low. And, he has a zero white blood count as well as being septic with Blood Poisoning. Dr. Swerc informed us that the procedure could not be done without a ventilator and when giving it to him this time, there was a good chance he would not come off of it (it being life support). He then told me that I needed to discuss seriously with Mike his "end of life" wishes. Swerc told me that I should consider calling all of his family in to see Mike b efore the v entilator was put in because once he has it, he remains on IV Morphine sedation until he can breath on his own. I called Mikes mom. I then called Katy who called Everyone else. Thank you Katy!
I could not believe it, but one by one, they all got in to see him before he was taken in to surgery. Luckliy, he needed plasma, platelets and blood b efore surgery so that gave us time...and Missy and Greg were able to get in from Montoursville...Becca and AJ from Hughesville...Chuck and Brad were the first to arrivea, from Cherry Hill, NJ and Katy and Phil from Pottstown. Mike went into surgery with a smile because the last thing he saw was Phil, Greg and Noah running (literally running) down the hall of the surgical holding room so they could see him before he went in. We all crowed the waiting room....Shortly after came Kim and SiSi came. They also made us smile....Sisi took a picture of a license plate that she saw on her way to the hospital. It said "BecMike".......Sisi said that must be Good Luck. Mike loves that little girl.
Next, my dad came. Mikes dad passed in 99 and since, my dad has fully been a father figure to Mike. My dad drove in from RI to be with Mike, me, Mikes mom and the family while my mom and Jill took care of the girls. Oh....the girls.......They do not know any of this!!!! All they know is that daddy is in the hospital and will be back soon. We dot know want them to know anymore than that right now.
The surgery seemed to take FOREVER....but in realty, forever was only about 2 hours or so. Dr. Swerc came out. Mike had a left Thorocotomy for Pleural Effusion which is fluid in lungs, another Pericarial to remove fluid around the heart, as well as they are keeping drain tube in to keep chyle fluid draining from his lungs. They said he would be going into ICU rather that Surgical Recovery. I was able to sneak in to ICU right after he got b ack. The nurses initital response was to yell at me to go back to the waiting room, but I tried my absolute hardest not to burst in tears...I just pleaded a little and they let me stay. I wish I could say he looks good, but he does not. The night was extremely hard. Everyone in the family was able to into the room, one at a time, and see him. He is fully sedated.
Like I said, the night got bad. The sedation did not seem enough at times, he was agitated and really fighting the nurses. They need to put a tongue block in because he was trying with all he could to get the tubes out.Even sedated, the guy is a fighter. He's awesome. Gotta love him.
This morning has brought a flood of doctors. I am lucky that they let me stay the night because the doctors were all in around 6am. As of now, he fully sedated on IV morphine drip. We can only hope when they attempt later this afternoon to have him breath on his own that he will be able too. PRAY.
I know that everyone is going to ask what they can do and for that, I love you all!
Well, you can really, deeply pray.
Next, you can keep all those details personal. Please do not forward this site. Please do not tell your children how ill he is....Mike's kids DO NOT need to hear that their daddy could die while at school.
I wish I could say that he could have visitors, but he can not. I do not leave the room, so I can not visit eithier...but thank you. His immediate family are the only other folks allowed back here and they can only come in one at a time.
This is Mike. Mike will. Beat this. This is another super shitty, super painful bump in the road. Yes, the doctors told me that there is a strong possiblity that he will pass away. Do I believe them? Not really...I think Mike will be coaching softball in the spring.
I love you all,
Becky
I wanted to post the information for the blood drive on here as well....
We are having a blood drive in the parking lot of Dynamite Woodworking at 180 Delaware Avenue in Palmerton, PA in honor of Mike Machinski on Monday, February 23, 2009. Registration will be 5 minutes before your scheduled time at Hope Creations (next door to Dynamite at 208 Delaware Ave).
The times for the blood drive has been extended to:
1:30 pm - 7:00 pm on Monday, 2/23.
We have a goal now of 60 people!! Please email me to sign up for a time slot...slots are every 15 minutes beginning at 1:30 pm. Email me at mbmachinski@yahoo.com
Every 2 seconds someone in the USA needs blood. Please consider helping us on this blood drive! Everyone who volunteers will recieve a free "Cancer Sucks" pin donated by Hope Creations. We will have snacks and refreshments at the blood drive for you. Also, our friends at Dynamite Woodworking and Little Bit of Country will be offering in store discounts to everyone who donates.
All of the blood donated to Miller Keystone Blood Drive stays in the Lehigh Valley. This blood drive is being organized as an effort to help other cancer patients and patients in need of a blood transfusion. Our goal is to help restock the blood bank from all of the blood Mike has recieved over the years! It is our way of saying thank you and we truly appreciate your help by coming out and donating blood on Feb 23rd!
I just wanted to THANK YOU for the overwhelming response to the blood drive that we are having in honor of Mike. WOW! Miller Keystone needed to organize a second coach for the blood drive....Thank you! If you have not yet signed up for a time to donate blood and would like to be a donor for the blood drive (it will only take 15 minutes of your time) then please email me. mbmachinski@yahoo.com
PLEASE FORWARD THIS EMAIL TO YOUR LOCAL PA. FRIENDS SO THAT WE CAN REALLY ROCK THIS BLOOD DRIVE AND FILL THESE TWO COACH BUSES UP WITH BLOOD DONORS...REMEMBER IT WILL ONLY TAKE 15 MINUTES OF YOUR TIME BUT IT COULD SAVE A LIFE!
Thank you very much,
Becky Machinski
1-610-297-2516
mbmachinski@yahoo.com
Anyways, I am getting ready to start chemo again next week and boy am I excited.......not ! It kicked my butt last time as far as energy and bloodwork goes. I am still feeling tired from the last round. My eye is starting to droop again and the pain in my eye is coming back as well(all caused by the horners syndrome, which is caused by the tumor in my neck cutting off my jugular). It had let up a a little bit during this first round of chemo so hopefully it will help again this time. We shall see.
I want to let some friends of ours know that we are thinking of them in their time of sadness. Their father/grandfather/great grandfather has recently passed away. Unfortunately we didn't have the pleasure of meeting him but from what I understand and from the stories I have heard he was a great man, husband, father and friend. God bless all of you in your time of loss. We want you to know how happy we are that you all are part of our lives.
Thanks again for all of your kind words and thoughts. Like I have said a million times I can not thank you all enough or tell you how much you all mean to me. Thank you and enjoy life as much as you can because you never know when our time here may be up. Take care and talk to you soon.
Love,
Mike
I have attached an entry from a gentleman that Becky's family knows and who is also battling cancer and I wanted to share it with all of you. It is a little long but very insightful into another persons battle and views. After you have read his view on this beast you can only imagine all the different views and experiences that others have had with this damn thing. Here it is:
Well, where was I last….seems like the Holiday Buzz has worn off and life is slowly inching back to "normal". What hasn't been normal has been the changes to my plan of attack with this disease. Not until just this week am I at mostly at peace with things. It has been a week of Doctor meetings, mental wrangling (for them as well as me), and chemotherapy….yes chemotherapy.
So on January 5th I got a call from Big D, my Surgeon ( I've just begun to call him this because I feel like it, not out of disrespect or because he's somehow large). Now mind you this man is a flat out brilliant and talented veteran surgeon, but he sometimes seems to be thinking out loud as he talks to you…as if he's trying to convince himself of what his plans are. I know he spoke to my Oncologist the previous Friday afternoon, but neither of them contacted me (which of course set off a weekend of second guessing). But when given enough time like that Big D can be very thoughtful, quite insightful and ultimately leave you with the feeling that you are his ONLY patient and that he treats you like his own son. I've come to appreciate these moments and take the office visit "off the cuff" stuff with a requisite grain of salt. So Big D had good news….my rectal biopsies came back negative for cancer. Tentative good news from below the waistline! Now it's not any guarantee that you got it all—merely that where he sampled during the colonoscopy had no cancer cells in them. But a small victory in that perhaps those awful 6 weeks this past fall did some good. As with all good news, every silver cloud has a gray lining. He also told me that he spent all day Friday going over my CT scan from December with a radiologist at his side. They compared it to my original CT from last year and my late summer CT. On it, they determined that I still have seven liver lesions. Five "old ones" that they identified from the original scans that seemingly "resolved" after chemo, but only to the point where CT couldn't pick them up. Then there were 2 "new ones", which he said probably were there before, but had never reached minimum size for detection and chemo just had kept down below the radar.
SCIENCE NERD MOMENT: To get an idea about the difference between a million and a billion, think on this. The average human body has around 30 trillion cells. A 1cm tumor (which is minimum for most breast cancer mammography detection) has a minimum of 1 billion cells. Studies in the breast cancer world show that a single cancer cell at normal doubling rates only becomes a million cells (1 mm in size) by year 4 or 5, and that it takes until year 8 or 9 for it to get to a billion. So what's a million dollars between friends…well nothing practically if you're a billionaire. Nor is a million cells between tumors, but it's all the difference in the world when you detect tumors early. The other way to tell the difference between a million and a billion is to picture it in paper clips. One MILLION standard paper clips chained together would stretch from about Providence, RI to the Massachusetts border (17 or 18 miles). One BILLION of the same paper clips goes from Philadelphia to San Fransisco….ALMOST 5 TIMES! Kind of makes you feel weird about just how big my 9cm whiffle ball tumor was aye?
Anyway, the next thing Big D tells me is that he does NOT want to do colostomy surgery anymore unless I think I really want it because after pondering it all weekend, he did not think that impeding my quality of life was worth it. The "real battle ground", according to him, still is the liver; and not having chemo for the last 4 months has done it no service. He wants to continue to monitor the rectal tumor area for "progression", at which point we will change gears. However, he wants to move into chemo ASAP and get back to work beating back the liver mets. He spoke about it with Dr. Guarino and both of them thought that staying off chemo any longer would not be beneficial. The liver mets are too numerous and widespread to cut them all out, so it's back to the Funatorium for me as of last WED.
I have to say that I struggled for a long time with this decision. Part of me wanted to go through with the APR (fancy term for taking out my rectum) anyway. I couldn't get my hands around why, but I thought that it was because I just wanted something DONE….out of the way….never to come back. Even though results were negative on biopsy, I felt compelled to consider it. Starting chemo again last WED was tough on me. Not because I couldn't handle it or anything, but rather because it was an admission that this was going to be a marathon and not the sprint I thought it might be. I think I let myself believe that my Doctors were Patton (George C. Scott?) and I was a soldier in the Third Army getting the oncological version of "we're gonna kick the hell out of him all the time and we're gonna go through him like crap through a goose". Only recently have I realized that this will be more of a grind…the 2-4 limit version of medicine as opposed to the "all in with pocket Aces" kind of thing. And this chemo isn't going to be any different than the others….only longer. We're aiming for 6-8 months of it. And with it, of course, came some new side effects. For starters, the first four days were marred by INCESSANT hiccups. I'm talking 4-6 hours of them uninterrupted at times. Currently, I've been mired in reflux for the past two days. I've never had that before, and I have to say that tasting your dinner for five hours after your eat it sucks. I've started to look at Tums like they're the adult version of Smarties. Over the top of this is, of course, the Erbitux rash creeping into my scalp and face again and the inability to ingest cold liquids for 4-5 days following treatment, which stinks because I'm also having to pee incessantly. You can't drink enough water to satisfy your body's need for water because it fills your stomach and you feel like garbage, but then your body is purging the chemo out and your going to pee when your bladder is 1/3 full (I'll spare you the color details, but think highlighter colors). I think I had forgotten (blocked out?) how much chemo aftermath stunk. Fortunately, my energy has so far been better than in past sessions and I'm sleeping much less. Guess we'll save that for round two.
I went to Hopkins yesterday for some second thoughts with Dr. Diaz. He was recently featured on the cover of Johns Hopkins Cancer Center's magazine. Every time I see this guy he makes me feel good about what I'm doing, and today was no different. His first words to me were, "Damn you look good…I mean really good. I can't do anything for you…you're not sick enough for the stuff I'm working with". Just to give you an idea of this dude's genius….he's currently working with his team in an phase I trial of a bacteria that EATS colon cancer cells, Clostridium novii. They found it a few years ago, but the problem was that the toxins it produced by the bacterium would have infected and killed people who were inoculated with the bacterium as a treatment. So he and his researchers genetically altered the bacteria to be non toxic, but still crave colon cancer tumor cells. Freaking amazing stuff I tell ya. The trials are slow to go because the FDA says that you can't let your patients get fevers after inoculating them with the bacteria. Most people get fevers from bacterial "infections", so they go on antibiotics. This kills the bacteria they put in you to help. Kind of like chasing your tail, isn't it? Anyway, Diaz agreed that chemo was best and that I should not concern myself with surgery and get back on the drugs….just get ready for a long ride. Satisfied with his answer, I left and am now readying my home and myself for a long haul this year….hopefully I'll be off by the heat of summer.
Some bad news from the funatorium floor. In the time that I was off chemo I lost my first chemo comrade, Mark, known to you all as "Easy Rider". I asked Nancy Nurse about him last Wednesday to see how he was doing and she got "that look". I was thinking, "Oh shit….there's my first one." As I had written earlier, Easy Rider had advanced stage cancer of the esophagus, which isn't a pretty one to be sure. Any surgery essentially removes part of your esophagus and your stomach, and even the ones who survive it are often condemned to a life of eating nothing more solid than applesauce. His chemotherapy was absolutely BRUTAL, robbing him of his energy, his zest and that glow you have that says "I'm in this to win". When I last saw him , he was really banged up, but hoping that he could find a surgeon who would operate on him, as his original one said that things were too far along to be able to help him, but that either way he was headed to Key West for a short vacation to get away from it all. All I could think of was, "Wow….that's one tough SOB. I only hope that I stay that tough". Mark died on November 7th, just as I was finishing up my radiation therapy. I missed the obituary, but I hope that there's a Harley somewhere up there for him to ride….his earthly fight certainly warranted it. Mark was 48.
Then I get back to work to find out that our English department chair's husband was diagnosed with NH lymphoma, Stage 4a. "Stephan is a damned oncologist" I thought. "Doesn't ANYONE get spared from this?" Stephan works at Children's Hospital of Philadelphia (CHOP) and assisted us when my nephew Jack was being flown in with his brain tumor. Even the people who are there to help others with cancer are not immune to the beast. He has already started treatment and hopefully will be on his way to recovery.
This stuff isn't fair. It's doesn't discriminate. It doesn't care about race, color or creed. It's just bad biology….a simple misspelling of the genetic code that prevents your cells from staying out of mitosis. How freaking hard can it be to alter a mechanism so simple you did a report on it in middle school? Funny how living things are made up of four main molecules only, and we can't control them. Fortunately for us, there are folks out there trying to do just that every day: to master and tame the very mechanisms of life. I don't care who you believe created life, you have to marvel at how something so simple gets so complex, and how this mechanism, in it's simplicity, can hide, evade, infect and outwit the very organisms that "outrank" it in grandeur and ability to reason. I'm astounded, baffled, and awed by it at the same time that I hate it
i visited with Fox Chase on Christmas eve and the doctor said that I would qualify for the trial but I would have to be off of steroids for at least two weeks. He also said that he was concerned about the condition of my disease being too advanced for the monoclonal antibody because it is a slow acting drug and my tumors are pretty bad and big, which is causing other problems in my body. He suggested that I receive either radiation or chemo to try and get the cancer more uder control and then I would need to take a month of having nothing and then maybe I would get on the monoclonal antibody trial study. It is just one big circle of poison and nightmares and pain in the butts.
So I went back to my local oncologist and radiation oncologist and discussed with them what they thought I would do. They suggested I get a PET Scan to see how much cancer there is in my entire body and upon the results found out that there is too much cancer throughout my body to just do radiation on the problem areas. So I have started chemo as of yesterday to treat my whole lymphnode system in hopes that it will give me some relief as well as kill the cancer in the other areas as well. I started a chemo regimine call EVA, the drugs are etopiside, vilban and adriamycin. I have had 2 of the 3 drugs in the past chemo but the vilban is new for me. I have I mentioned that I hate chemo and am very sad that I have had to resort to this since I have spent the last 2 years doing everything I can to avoid chemo at all cost. It does so much damage to your body and I feel that I have spent the lsat 2 years of so trying to recover from all the damage that was done from the other chemo I had in the past. I guess I will have to get over that and just grasp what I am going through right now and be positive and just believe in what I am doing and it will work.
So the plan is 3 or 4 rounds of chemo if my body can handle it then off for a month and then do the monoclonal antibody clinical trial. Then bam it will be gone....ha-ha ! Gotta believe in that or believe in something.
Thanks again to all of you for all of your continuous support and love and I hope you all have a wonderful 2009 and that all your dreams come true in the future. Thank you, take care and god bless.
Love,
Mike
Other things happending while I was in the hospital though. I was complaining about a pain in my left eye for several days before the doctors acknowledged me and really looked at my eye and noticed that my pupil was smaller in that eye then my other and that my eye was sagging a little bit. At first they thought I was having a stroke and then upon further testing found that I have "horners sybdrome" which is caused by pressure being put on the nerves in my neck by the big tumors in my neck. Actually my interior jugular vein on my left side is completely be blocked and the interior jugular on my right side is being partially blocked. Meaning that there is no bloodflow through those jugulars going to my brain. Alos, meaning that if not taken care quickly that I could have a stroke....lovely ! So needless to say I need to get on some kind of treatment ASAP to reduce the tumors in my body. So after more testing and me saying that if they didn't release me before x-mas that I would walk out of here regardless if they released me or not. The other problem I am having is that my heart is racing everytime I do something simple like brush my teeth walk etc.... It is now in the 90 range and then will jump up over 130, which is very high. So something else that we have to figure out, I think that is being caused by the tumors in my body as well putting pressure on my heart and effecting its ability to pump the amount of blood it needs to so it has to pump twice as hard to get the right amout of blood through my body.
All of this I am afraid will not hold well for me at Fox Chase. I am afraid that this will all keep me out of the clinical trial and my only option may be traditional chemo but something has to be done.
Okay, so I lied.......I didn't keep it very short!!! Too much crap going on to not let you all know everything since you all are so kind and checking in on me. So off to Fox Chase and then home for Christmas with Becky, the girls and my Mom. Thank you to all of you for being here for me. Thanks to Becky for being here for me and keeping the family and her business going, which can't be easy with the economy and with all that is going on in our lives. Thanks to Becky's Mom, thanks to Becky's Dad and thanks to my Mom for all helping out.
Enjoy your holiday season everyone. Don't let any I love you's go unsaid and have a wonderful Christmas. You never know when you or someone else may not have another one so make the most of it. Take care, thank you and god bless. I love you all in so many different ways. Thanks again for your kindness and friendship through all of this.
Love,
Mike
I wish I could report that Mike's Doctor's appointment today went good, but it did not. As he wrote a few days ago, he has had a very difficult time breathing. He had a Cat Scan today and we were not even home from the drive back from the hospital when we recieved a phone call. Mike now has a pericardial effusion which means he has fluid around his heart. Dr. Friedman was concerned and Mike has to have a Echocardiography (a cardiac ultrasound) to determine how much fluid there is. This is why Mike has been in terrible pain and has been having a very difficult time breathing. Friedman said that Mike's disease is very active right now and that Mike really needs to have a treatment plan immediately following Christmas day. Like Mike said a few days ago in his journal, he has an appointment at Fox Chase in Phili on Christmas Eve. He just can't catch a break. It is like torture for him...constant pain and constant bad news. And I am at a loss as to what I can do for him. I am scared for him.
Please continue to pray.
Love,
Becky
I have found another clinical trial that is being done at Fox Chase Cancer Hospital(monoclonal antibody treatment that targets CD30 cancer cells) in Philadelphia that I am going to take part in as long as something does not disqualify me. I am meeting with them on December 24th. They gave me 2 dates to come down and they were christmas eve and new years eve.....both stink but I had no choice. It is kind of far away and I need to get on something ASAP but again I have no real choice. I am hoping that I can make it to that appointment. I never appreciated the simple task of breathing like I do now and just wish I could breath normal again. Again, these are the things that make you realize how much you should appreciate the simple things in life. Enjoy the simple things and expecially enjoy one another this holiday season as well as the whole year. Please enjoy, enjoy, enjoy !!!!
I have a Dr.'s appointment on Monday the 15th with my local oncologist and am thinking that I am going to have to get my lung drained again. Not sure which one though. I feel like my right lung needs drained but I am not sure if that is possible because of the procedure I had done before. I am not sure if it is possible that I have fluids in there because they told me before that the fluid had loculated. I guess never say never. Bottom line is is that I need something done to help me breath.
Becky and the girls are doing good. The store is a little slow due to the economy but Becky is really making it work with doing lots of special classes and sales that are trying to stimulate business. Becky has been really working her butt off and deserves a break. She works way too much lately. If you have a chance stop by the website and check out everything she has been doing. Her jewelry has always been amazing but some of the new stuff that she now makes is unbelievable. She is very talented. The girls are so busy with basketball, chorus, band, school play and girl scouts. They all got straight A's this last report card and are all such dedicated students. They are awesome and keep me carting them all over the place. They are really looking forward to x-mas.
Well, thanks again everybody for your continued love and support. I know I say this all the time but please know how much you all mean to me and your daily words never go unread and mean the world to me. If I do not update again before x-mas I wish you all a very merry christmas and a happy new year. I will try and update the site after my appointment on monday but if not happy holidays and take care. Thanks again for all of you and I am so grateful for each and every one of you. Merry Christmas !
Love,
Mike
Well, Kylie turned 11 on Monday, the 17th and I can not believe it. I can not believe that we have an 11 year old daughter. She is growing so fast and is almost as tall as me, which is crazy. We got her a pair of shoes for her birthday and we had the hardest time finding her size because she wears sasquatch size shoes now...size 10.5 in womans. She is going to be one tall little lady. So anyways happy birthday Kylie and I love you from the bottom of my heart. She means so much to me as do the other girls as well.
On the clinical trials front......I got rejected by about 4 more trials so it looks like I am going to just wait for the drugs to be ready for the one that I qualified for in Maryland at the NCI. They are telling me now that the drugs won't be ready until the end of January. When I think about it though by the time I go down there and meet with them then go back a second time for all the pre-testing and everything it will be JAnuary anyways. So in the meantime I just hope that everything stays ok and there is not major eruption of my disease. All you can do is do the best you can with what you are given and unfortunaately we have been given this, but we will make the most of everything.
Well, again happy Thanksgiving and safe travels. I am thankful for all of you and all of your huge hearts. Take care and talk to you all soon.
Love,
Mike
Well, I know alot of you are congratulating me on the NCI and the Sloan Kettering trials but I have heard nothing from them. I have been trying to get answers but have had no luck. The NCI trial says on their website that I do not wualify because I had a atem cell transplant but Sloan Kettering says I do qualify but yet I can not get in touch with anyone at the NCI. I have tried emailing and phone calls. In the meantime Sloan Kettering said they would look into getting me a drug that I could start taking here at Lehigh Valley Hospital but I have heard nothing after many a phone call. The Dr. at Kettring is supposed to be contacting my Dr. locally to set that up. I am sick of my hands feeling like they are tied. The problem is also that I am getting a little lazy in tracking it all down because these steroids are making me feel pretty good so I am forgetting about the fact that I am still getting worse. Crazy drugs. Well, good enough to eat and get around and enjoy life a little more than I was before. So I am still trying to figure out what the hell is going on with my treatment. Basicly, no one wants to give me anything that they are trying to get approved because they don't want me to die on their drugs and give them bad statistics for their drug getting approved. Whether its insurance, drug companies, money etc....it is always something making a hard situation even harder, but yet we need to always enjoy every moment as hard as it may be. Some times I think I am done and fed up but then I think what the hell is your problem you have all these people fighting and praying for you and you have Becky and the kids and it could always be worse so suck it up and keep pluggin away you big puss (ha-ha)! I know it could always be worse...I could not have all of your support. So again thank you all so very much for every little thing that you do and have done for us. Gotta run, gotta go coach another soccer game. One more after this and the season is over.....yeah !!!! Take care all and god bless!
Love,
Mike
As far as treatmet goes......Memorial Sloan Kettering called me back and said that I could start on one of their other trials while I am waiting for the drugs to be manufactured for the trial at the National Cancer Institute at the National Institute of Health in Bethesda, MD. The problem with that is that I would have to drive to NYC twice a week and then start driving to Maryland when the drug is ready there. I don't think I can really afford to go to NYC twice a week and then go to Maryland for however long I need to. The other problem is that the drug they are suggesting is obviously experimental because it is a trial but it kills my good cells, which I am nervous about. My bone marrow is shot and I don't know if I can handle that and then handle the drugs at the NCI. I just wish I could have gotten on the targeted drug that only kills the CD30 lymphoma cells, but this is not a perfect world by any means. When Sloan Kettering called back they scared me and said that they don't think I have a month to wait for drugs and I should start right away on something. I think maybe they just want me for my body(ha-ha) to try their drugs on and the other part of me thinks they are actually concerned. I don't know !!! I am just confused as to what to do. I feel like I need to get moving on something but I feel like my hands are kind of tied waiting for drugs to be made and drug companies saying that I am too much of a risk for their drug and they don't want me dying on their drug. The fluid in my right lung has lockulated and I am now getting fluid in my left lung, which is all making it very hard to breath. So I have all this energy from the steroids, which you can see by my rambling but my lungs not being able to function makes it hard to continue to do stuff. Like going up a flight of stairs makes me have to stop and breath heavy for a few minutes before I can move on. I feel like I am draggin my legs up the stairs or if I have to lift them for anything. With as bad as things are right now and how crappy I can feel I am trying to enjoy every minute right now and just try not to go crazy in my own head !!!! I have decisions to make and I am still alive so I will live the moments that I have with my family and friends to the best of my ability and by gods grace maybe a miracle will occur. Thank you again for everything that you all do and say because it means more than I could ever express. Take care and talk to you all soon.
I keeping hearing Allyson tell us, "Never Give Up" and we are trying, I love you girl, but some days are harder than others. We went to Sloan Kettering yesterday and he didn't get into the trial. It was a highly frustrating day in NYC for us.
Everyone is so kind, always asking how Mike is. And, I have mastered the smile and "he is hanging in there, Thank you" I say, and quickly change the subject as to not have to give details. In honesty, the details are not so great. I don't want to scare off whatever friends we still have left with the nasty details. Do people need to hear how often he thows up, or that he is down to 135 lbs, that he is a grouchy, that we have to journal his food intake or that he gets winded going to the bathroom??? And for me, my multi-tasking skill are being tryed & failing...the business is extremely slow, my worker is making more than me, the IRS is up my ass and in general, Mike and I feel like it has been a four year nightmare.
So, by this cheerful blog, you can guess, he DID NOT qualify for the trial. We spent 8 hours in NYC and I have $130. in parking fines, but NO...he is not in the f-in trial.
Why??
Because Mike had an Allogeneic Full Stem Cell transplant (from a donor) and by transplanting from a donor, he should have been cured according to statistics. Since his cancer relapsed post transplant, they assume that he would be to sickly to undergo clinical trials. Clinical trials are done with new meds that they are trying to get approved by the FDA and the pharmacutical companies do not want to take a risk on someone that has already failed from a donor transplant. The assumption is that an allogeneic stem cell transplant would work, and if it fails, you will die. It is basically that simple in their book. Now, if he had an autologos transplant, which is using his own cells, then he would have qaulified.
There is a trial going on at the National Cancer Institute in Bethesda, MD that this Dr. at Sloan Kettering told us about yesterday and he beleives that even though Mike had a donor transplant, he may still qulaify. The problem with disqualifying Mike from this N.C.I trial may be that he has had to much radiation treatment. We need to find out more about it.
Keep praying,
Becky
We saw Dr. Porter yesterday at the University of Penn.As Dr. Porter put it, we generally go to him in "crisis situations". Mike thought the visit went okay. I was annoyed with Porter's answers to everything and I don't think he gave us much help. It felt like no sooner did he walk in the room that he was then giving us papers to give to the girl on our way out. Overall, he suggested that Mike go back on predisone and also try physical therapy. We also discussed clinical trials with Porter and he agreed, that it is worth a shot. He doesn't think Mike's strength is well right now and wants him to work on increasing it...that is where the physical therapy comes in.
There is a clinical trial at Sloan Kittering Memorial Cancer Center in NYC that Mike's sister, Katy found and we are hoping he qualifies for. I had his oncologist office send everything down to them and his case was supposedly reviewed yesterday, but we have not heard back yet. The study is on targeted therapy for the CD30 cells in re-occuring Hodgkin patients. The medication in the study is MDX-1401 and is a monoclonal antibodies similar to Rituxin used in Non-Hodgkins patients. It is something that Mike is willing to try, and should qualify for....hopefully!
Mike has had fevers and chills, these past few days, as well as night sweats. The doc said it is all part of the Hodgins being very active right now. Overall, he is tired and weak, and your prayers are very much appreciated.
Thank you!
Love,
Becky
We went to the Dr. yesterday and things were okay other than my low blood count. I received 2 units of blood while we were there. The Dr. said that he didn't hear any fluid in my lungs and we had a chest x-ray but we didn't get the results. Other than that there wasn't really any other news. It is just recover fully and then we will get started on treating the cancer.
I want to thank you all again for all your post and prayers. I really appreciate your thoughts and prayers. I am scared shitless right now and do not want to leave my 4 girls(Becky, Kylie, Mya and Emma)husbandless and fatherless. It just isn't fair to them that they are having to go through all of this. I want more than anything for them to have a normal, happy life. I love them all so much and just want them to be safe, happy and well taken care. They are the reason I will continue to fight. I just want to get back on my feet so I can start getting back to normal like coaching soccer, going to the store and just being somewhat normal and being a dad and husband. I have been stuck in the house since coming home from the hospital. Well, enough of me rambling. Thank you all of you for everything. I am physically trying to recover and will let you all know anything new when there is. Take care god bless and talk to you soon.
I am recouping physically and mentally right now so I can come back strong and kick this in the ass !!!!
love,
Mike
According to Dr. Swerc the surgery did not go as planned. It was also supposed to be a 3-4 hour surgery and lasted one hour and 10 minutes since they could not go in and do the ligating of the thorastic duct.
The docs notes said......
"Diagnosis- Advanced Lymphoma with Recurrent (R) Pleural Effusion. Post up DX- Chylo Effusion."
"Surgical Procedure-Flexible Bronchoscopy, R VATS, Video assisted Thoracoscpy, (R) Pleurodesis with powder aersol talc #1680, two units incisionally."
"Findings-1800 cc Chylo Effusion, unable to locate Thorastic Duct, 2 blituration of tissue planes and Pleurodesis performed"
Now I love you all, but before you email me and ask me what all this means, know that I dont completely understand it eithier but "Google" does so yoru best bet is to google it! When looking it up, the fluid is called "Chylothorax" and it can happen with malignant lymphomas at end stage.
In asking the surgeon why he could not locate the Thorastic Duct to perform the ligation, he said because of all of the inflamation in Mike's chest from scar tissue and the Mediastinal tumors from lymphoma.
So now what??? We don't know. If one more doctor gently rubs my leg and tells me one day at a time, I may punch him. Docs can be so freakin cocky and arrogant.
AHHHHHHHHHHHHHHHH!
So, the girls and I decided that the best thing that we could do is pray to God and from the mouth of our seven year old "we need to pray that God is not ready to take Daddy yet"
Last night I had the awful duty of explaining to the girls that daddy was not doing so good again. I brought the girls to dinner late last night after their meet the teacher night and we were the last people in the restaurant and the girls were noticably sad and as they closed the restaurant, our waitress had the girls come sit up at the bar and gave them free sundaes. I could not believe it. Here is this 23 yr old girl working who clearly must want to go home and a complete stranger. She took the time to completely change the mood of 3 sad little girls and put such big smiles on their faces by letting them sit up at the bar, eating sundaes at 9:30 pm on a school night & watching "Family Guy", nontheless. Kylie, Mya & Emma thought they were HOT SHIT! So, if you go to Jack River on 209 here by us, ask for Chelsea and give her a big tip! (Smiles)
I seriously love all of you so much, as does Mike. We have truly learned through this awful battle who are good friends are. We feel so blessed to have all of you in our lives. This has truly been and is a journey that will forever change who we are.
We love you,
Becky
I wanted to give an update on Mike. He is on a bit of a low right now. He is feeling very miserable & tired. He is uncomfortable and has no energy. He is having a very tough time breathing. He describes it as everything feels crampy...he feels like everything is just tight and smushed together. He has no energy to do anything. The smallest activities drain him and he is really feeling frustrated.
He is having surgery on Monday morning and will be in Lehigh Valley Hospital in Allentown for 3-4 days. He has been getting fluids in his lungs due to a spontaneous chylothorax which is associated with mediastinal diseases such as Mike's lymphoma. The doctors were being conservative in trying to treat it with just draining and now there is no other choice but to have this surgery. Mike seems to get all this wierd crap. He is a true fighter and has beaten all odds before, but he is in for the fight of his life with this lung involvement. Please continue to pray for him.
At the surgery consult this week, the surgeon said that in all the cases he has done, it has always been white fluid. The surgeon said that he has not seen the green fluid, like Mike's since his case studies as an intern. The past three times Mike has had the fluid drained, they did not test it for all the proper tests a person with Mike's kind of lymphoma should have. The surgeon is going to test the fluid on Monday prior to the surgury, to test for something called "Kyle". It will determine if the surgery becomes even more invasive. Just please pray. Mike has been in alot of pain these past few weeks and it is becoming harder and harder for him to hide his discomfort and deal with his pain.
When the thoracic duct is blocked or damaged a large amount of lymph can quickly accumulate in the pleural cavity, this situation is called chylothorax and this is what Mike seems to have going on.
The good news is tht it is Palmerton Festival weekend...land of fatty foods and on Sunday, the surgeon wants Mike to eat fatty foods to help the fluid up in his chest so that there is more to take out and test Monday. So lots of funnel cakes and elephant ears for Mike this weekend! Mike is not worried about the fluid build up since he can already tell that it is back there. He can hear a clicking when he begins to fill up and it is more and more difficult to breath.
I hate to see him in so much pain and I just wish I had the answers for him. I never know the right words to say. I know I love you Mike.
Lovingly,
Becky
Love,
Mike
This is the text book definition of the procedure Mike has had done these past few weeks "Thoracentesis is a procedure to remove fluid from the space between the lining of the outside of the lungs (pleura) and the wall of the chest. Normally, very little fluid is present in this space. An accumulation of excess fluid between the layers of the pleura is called a pleural effusion."
One of the options that we will discuss with the surgeon on Wednesday is "A chest tube (chest drain or tube thoracostomy) is a flexible plastic tube that is inserted through the side of the chest into the pleural space. It is used to remove air (pneumothorax) or fluid (pleural effusion, blood, chyle), or pus (empyema) from the intrathoracic space. It is also known as a Bülau drain or an intercostal catheter."
Love,
Mike
My disease has progressed so much that it is now able to be picked up by the catscan. The tumor in my lung is now 3 inches, I have many tumors in my mediastinam and the tumor on my right 5th rib is gotten larger and is pretty bad. The worse thing though is that I have fluid in my chest cavity that is not allowing my right lung to fully expand, which explains the shortness of breath and lack of energy. This is a pretty bad sign and has me scared absolutely shitless for Becky and the girls. I can not leave this earth with them still here. I need to be here for all of them and I don't want to even imagine the hell that they will go through if I leave this earth. I am just beside myself thinking of all of them. I haven't stopped crying since my appointment. I am so pissed, sad, angry, annoyed, tired etc.....I just want to be better for them so we can move on and they can have their daddy to take care of them for the rest of their lives.
well, I am having the fluid drained from my chest and lung on Thursday the 14th(tomorrow) and will take it from there. My lung could possibly collapse during this process. This is a bad sign because the fluid will just continue to come back. I am scared, confused and all of the above.
I thank you all again for all of your awesome support and want to let you all know how much I love and appreciate all of you. Enjoy every minute you have. Take care and god bless.
Love,
Mike
I went and saw another Dr. this past Monday, who I had seen before at Jefferson and he reviewed everything I have been doing and he wants to do bloodwork as a matter of fact alot of bloodwork. Oh well, not big deal I have been stuck so many times already that it doesn't phase me anymore. I think he will be good in having some fresh ideas as far as my supplements and trying other things. He suggested that I try doing vitamin C twice a week but gas and the cost may prevent that. We will have to see. I have some more pains now on my lower right ribs that just kill me whenever I take a breath. It feels like a knife is being stabbed right underneath my rib cage. So hopefully after the bloodwork comes back, which I haven't done yet he will adjust things to try and get this beat back under control before it gts any worse.
Some more bullcrap has come up in town that has derived from all the other stuff that was said from before. These people believe the things that they hear as gods word and judge us based on the words of some other small minded individuals. It hurts to hear that crap from people that you throught were your friends. Its to the point where I don't feel like staying in this area anymore. You almost feel unwelcome at times. Just hurts almost as much as that knife in the ribs.
Becky and I have been talking and I am thinking of starting a dogwalking business to help with the fincial situation as well as it might get my butt to push myself a little harder to exercise. Although I am nervous about letting anyone down if I get so sick again that I would have to back out, which I could probably find someone to cover but I am mr. responsible and hate to let anyone down ever. I just need to start doing some kind of work or something to make myself feel valuable like I am contributing instead of sucking everything dry.
Well, thank you again for all your support, love and friendship and I wish you all well. I hope your summers are great and that our paths will cross this summer just so we can say hi. Like I always say I can not thank you all enough for everything that you have done for me. Thank you for visiting and I will talk to you soon.
Love,
Mike
And then their is our boy, Mike. God Bless him. He is in continuous pain. His sister, Katy and his mom brought him to a different holistic specialist and he is on additional supplements. He really needs radiation to elimate the eroding of his ribs from the cancer and to help with pain in his bones. There are two problems with the radiation...first medicare only pays 80 and next, the radiation really makes him sick. He has already had 120 radiation treatments during this past few years of cancer hell and he is just burnt out. His wieght is very low right now and it takes him awhile to get going in the morning. God Bless him...he still keeps going though. And the fiesty attitude hasn't let up a bit! He is a fighter...all we can do is believe that he will fight and beat this cancer!
Love,
Becky
I am continuing to wonder what the hell I should do as far as my radiation treatments go. The pain in my chest continues to increase but I don't want to be so tired from the radiation that I can't do things. I want to be able to enjoy the summer with the kids and if I am sleeping all the time I won't be able to do that. I also found three more large lumps on the right side of my neck, which gives me even more worries to think about because I have never had anything on the right side of my neck. It has always been on the left. I have started taking some new supplements along with all the other ones I have been taking so we shall see if they help anything. I also started doing things to improve the health of my digestive trac/colon/intestines so hopefully that will help as well. Everything is time and money and with the price of gas that makes it even harder, but that goes for everybody. This country needs to do something about the price of gas....it is just rediculous !!!! My mother continues to come down and visit every week, which has been a godsend for us. She is our housekeeper, gardener, babysitter and cook. I could probably add a few more titles as well but she is a huge help. Thanks mom.
I have not been feeling well lately and it continues to get a little worse as times goes on as does the pain as well. I am just so sick of waking up every day feeling like crap and having to fight all day to feel good. I am sick of having to eat a certain way, having to drag so much crap with me whenever I go somewhere and just not being able to go somewhere and just order food without having to think about. I am sick of all of it especially the horrible tasting supplements that I have to drink. I guess I should stop bitching because at least I am waking up every day and I am still here. I just wish it would get a little easier thats all. Just a little bit.
Well, hopefully with the warmer weather being here that will make us all feel a little better. I wish all Fathers a happy father's day and to the rest I wish you joy and happiness as well. Have a great summer and please be well and tell each other you love one another as much as you can. Thank you to all of you for all of your kinds words and for just keeping in touch. I enjoy hearing from all of you so much. Take care and be well.
Mike
I wanted to share something with you all that I witnessed on my way to my Dr.'s appointment. I was driving down the northeast extension of the PA turnpike when all of a sudden traffic started jamming on their brakes. I was trying not to slam my brakes because it was pouring rain and I didn't want to hydroplane but I had to and wondered what was going on. In a few seconds I realized that someone had flipped and hit the embankment and was turned upside down in the right hand lane of the road. I was shocked to see what I saw next....no one had stopped to help this poor soul. Everyone was driving around him and continuing on. Whatever those people were in a hurry to get to that made them not help this person was and is not worth it. Take time and slow down to help out one another. Whatever is there will still be there. I stopped and soon after me another car stopped and it was a good thing we did because the poor guy had gotten a huge slash in his head and was totally disoriented and stuck upside down in his seatbelt and the car was still running. He couldn't get out of the car and if anyone knows the northeast extension the exits are about 20 minutes apart and help took a little while to get there. Thank goodness he was basicly okay with some srious cuts but what if no one would have stopped, he may have suffocated to death or whatever. Take time to slow down and smell the roses. I have found myself driving slower now especially with the kids in the car because seeing the violence of that car crash really made me think and made me realize how precious our lives are and how much it could all be taken away in a second. Tell everyone you love that you love them and nothing is too important to not stop and help another human being. Love one another, be kind to one another and Karma will take care of us all. Sorry for the long story but I was totally shocked by this and wanted to share.
Thanks again for all of you and all that you have given and done for us. We love and appreciate every last one of you.
Love,
Mike
Thank you so much for all your prayers and support and kind words. We are so grateful. We know that we could have never made it this far without the support of all of you.
Mike had a nun visit us this evening with blessed wine. We are trying everything. He had vitamin C today and has been focusing more on what he eats...for the most part. We registered the domain name "for all the mikes" (forallthemikes.com)and we are setting up a webpage with links to all the things we have learned to be of beneift over the past few years, so we can in some way help other families getting this diagnosis. We will post it once it is online & somewhat set up. Our new and very special friends, Kay and Bill, own Boulder Woods campground outside of Quakertown, PA and we had a great weekend there with our friends Jill, Al and their awesome kids. Kay is renovating a camper at the campground for other families that need a respit and we hope to incorporate this and other helpful resources for families. We have been so blessed, it is all about paying it forward now, as Mike continues to fight!
Mike sees his radation doc in a couple weeks to plan radiation on his rib. He does not want to get anymore radiation, but it does not seem as though he has much of a choice.
Thanks so much for all the kindness you have shown us!
Love,
The Machinskis
For "sincerely concerned" and "Lilibeth whoever" I apologize for you seeing my message that way. That is not the way it was intended to come across. I would never wish cancer on anyone and I don't believe I ever said that. You obviously don't know me or Becky at all. If you thought I sounded like a little baby then again I apologize but when you attack my family I am going to say and do whatever I want or have to to protect them and make them feel better. Whoever started this gossip crap is the baby. And by the responses you are in the minority on how my message came across. So other than wanting to cause conflict I don't know why you would even post on my site. I can only imagine if my kids find out about all this stuff going on in town.....I am sure they would feel terrible and I do not want that at all. My kids have been through more then you can imagine. So don't come on here and say anything unless you would like to leave your real name or you would like to call Becky or I to discuss. But don't ever say I wish cancer on anyone because I would never ever do that.
To everyone else I am sorry and so sorry if I offended anyone that has been so supportive of us this whole time. I am so sorry I drug you all into this. I thought I made it quite clear how much I appreciated all of you and how much love and care we have for all of you in return. If I have ever sounded ungrateful in any way again I apologize. I thank god every day for all of the support we have gotten from family, friends and people I have never even met. Thank you, thank you, thank you. I have told you that we would not be where we are without all of you. You are my backbone. I may not be here still without all of you. I am so sorry that I got out of control but I was so upset and hurt that anyone would say any of the things that I have heard are being said. I should have just ignored it but I saw how upset Becky was and still is by this so I couldn't leave it go without responding, which I may have done in the wrong way, but at least they got my point. Thanks to everyone else for being supportive.
Well, as for my PET scan results and my Dr.'s appt. yesterday all is not well. My cancer has gotten worse unfortunately. The tumor in my lung has doubled in size, the tumor on my 5th rib is more active and is destroying the rib to the point that it now makes a clicking noise when I breath or move a certain way. Also the tumor on my 11th rib on the leftside of my back has gotten bigger and more active as well. Overall not a good report but it could have always been worse. The rest of my cancer in my mediastinam(chest) is still there and active. There are too many tumors in my chest to mention them all. So I will now set up an appointment to go see the docs at PENN and I have an appointment on the 9th of May to see my radiation oncologist to zap the spot that is destroying my 5th rib. That will add to my 120 radiation treatments that I have already received. Other than that I am going to start eating even healthier, keep taking my supplements(possibly some new ones) and just be positive as long as the local gossipers will allow....I am just kidding. I will not let them keep me down, but Becky I worry about because she so loves Palmerton and this community and it hurts her deeply to feel like we have no friends here. I know we have friends all over the US but if you have no friends to turn to here it is really tough. Again thank you to all of you for your continued support and we are forever thankful to you. I think it was Winston Churchill that said in one of his quotes "don't give up, don't ever give up". As for now I don't intend on giving up I just have to get over the sadness and frustration of the latest results and then we will continue business as usual. It just gets tough continually being kicked while you are down. Again thank you to all of you and have a wonderful and happy day. Take care and god bless.
Love,
Mike
**We are password protecting this website in the next couple of days. We would be happy to give most of you the password, just email us mbmachinski@yahoo.com ***
This crap I have been hearing about people talking badly about my family and I can kiss my cancer infested ass you unbelievably selfish SOB's. You want to talk badly about us and say why do they get so much, why did they get chosen, they don't deserve so much. I have heard so much bullshit from people around this town how people have talked poorly about us since the show aired. I am in complete disbelief and am shocked and so hurt. I will gladly trade positions with any one of you who think we got anything we didn't deserve. You can have my cancer and I will take your health. I am getting my PET scan results tomorrow and if my cancer got worse I will even be happier to trade with your sorry selfish ass you cold hearted jerks. You can obviously see that this hurts me beyond belief and for us to have to even hear any of this is just plain crap. Like we don't have enough to worry about. You want to have to wake up every morning thinking about death and how your going to get through the day today. You give me one day in my shoes and your weak ass will take back every word you ever said.
We do feel guilty about being chosen because there are so many other people out there that have it worse than we do. But thank god for my sister and so many other amazing people, who contacted Oprah and were looking out for us because we would have lost this house long ago and my childrens life would have been affected even more than it already has. I have had cancer for over half of Emma's life and Becky had cancer when Emmma was months old so her whole life one of her parents have had cancer and she has worried about us ever since. I think Emma deserves all the happiness in the world for what she has had to go through. Mya and Kylie deserve the world as well because they tell me all of the time that they are so worried that I am going to die and that they don't want me to die, so feel free to swap lives with me and put your whole family through this nightmare of unhappiness and stress.
I wish I could work and support my family. Nothing would make me happier, but I can barely handle the 4 or 5 hours per day that I am at the store helping Becky and trying to make the store profitable. We don't make any money at the store yet. If you think we have some great life now because of the show you are highly mistaken. We still barely have enough to get by with local taxes, raising three kids and all the medical bills and medicine. I have medicare that only covers 80% of my medical bills because the county says I make too much money on disability to get any other coverage, which is a joke. We can't even afford health insurance for Becky who should be going to the doctors every month to get her thyroid levels checked because of her cancer that she had. She takes medicine every day for her missing thyroid and will have to take it for the rest of her life. Do you want that? You don't want any of this crap in your life. I go every week for a treatment and am in constant pain. My left hip is slowly losing mobility and the rest of my body is slowly decaying to the point of it hurting to even walk, but yet I ignore it to try and have the happiest life I can for our kids. I coach basketball, softball and soccer because I want to spend as much time with my kids as I can and not because I feel great or have so much money now that I don't have to work and I can sit around and just do whatever I want. I can not believe tht anyone would start all this crap and contribute in a conversation about why do we deserve this. There are alot of super nice people in the Palmerton area and we are so thankful for everything that the people of this community have done for us but there are also apparently some jealous people here also that can go fly a freakin kite. Like I said if you want to switch places with me at any time I will gladly let you take a walk in my shoes but I will not trade my life with you because you don't deserve to get my wife and kids. The only part you deserve is the cancer you self centered jerks. I do hope that you gossiping ignoramouses are reading this because you will know exactly who you are and you should feel like the worlds biggest ass right now. I hope god takes pitty on you when it is your judgement day my friend. For everyone else I am very sorry for venting on here about this but I had to get it off my chest and short of contacting the local newspaper to address this issue I didn't know how else to get it off of my chest. So if I am still upset about this I may contact them and have them write an article regarding this and I will give them names so everyone can know your true colors. If this offends you and you are bothered by this then please don't talk to me or anyone in my family and we will gladly never speak to you again. Thanks for your support.......said with absolute sarcasm.
Again To everyone else I am sorry for putting this on here and I appreciate all of your support and help. Like I have said many times I would not be here without all of you. You have all done so much. I know 95% of you have nothing to do with this and again I apologize and feel bad to air this in front of all of you but this really hurts me and it really hurts Becky too. I am just shocked but this jealousy of some people. Again thank yu to all of you for doing so much and being so awesome and like I said it doesn't apply to most of you and god bless all of you and take care. I will let you all know whats up after my appointment tomorrow but for now I needed to vent. Thanks for letting me vent. I love you all and thank you all so very much for all your support and love. Take care. Again I am very sorry.
Love,
Mike
As far as my PET scan results go I have not heard anything yet. I am not scheduled to go see my Dr. until the 29th of April. I am going to call tomorrow to see if I can get some results, which I am nervous about because the chest pain has been horrible lately from the tumors on my upper ribs. So keep your fingers crossed but like usual I always expect the worse. Thanks again to all of you and god bless. Take care and talk to you soon. We will let you know as soon as I we do.
Love,
Mike
I can't believe that our OBGYN who delivered Kylie (now 10 yrs old) from RI found us! So cool! This show has reconnected us with so many old friends. It has been a total blessing! All of your positive feedback is really energizing Mike! Thanks so much for all the support!
Mike has his next PET scan next week.....we need all the prayers we can get. The past few PET scans have shown spreads of disease each time. He takes several supplements and eats a healthy diet and is extremely positive..let's hope that gives us a some good change.
Just one favor.....I realize it is a public site now, so I just wanted to update our new friends on our only rule with this guest book......it is only positive! We work super hard on keeping Mike positive. We are fully aware of how awful cancer is and our hearts break for everyone who has lost the battle with cancer. We have lost Mike's dad and some special friends to the disease as well. We keep all those who have passed in our hearts. Please do not mention death on this site though. Please do not take that the wrong way. I just need to have Mike's head filled with thoughts of "you will beat this, everyone from here on in will beat this, there will be a cure, no one else will ever die of cancer." It may sound like denial, but if that is what it takes to keep him alive, that is what I need to do. It's the hippee chick in me guys...only good thoughts!
I love that you have all written to us. God Bless each and everyone one of you and your huge hearts!
I wish the Big Give would have shown how hard the contestants really worked to make that few days in NYC so amazing! I hope that you will keep watching and cheering on Brandi and Cameron! They have done so much for us. They are truly genuine, caring, kind people. I can't say enough about them! They have continued to care for and keep in touch with our family and we are big time routing them on to win! Brandi is much more than a "pageant queen" and we can't say enough about Cameron. They are like our guardian angels that Harpo sent to us! And the show did not show this, but they organized and sent our family to Hawaii last August. We are so blessed! SO BLESSED!!!!!
Thank you and God Bless, Becky
Thank you everyone who had written in to Harpo and nominated our family.
Becky
I have a PET scan scheduled for April 14th so I will find out what is going on with my cancer then. Please cross your fingers. I know I ask alot of all of you and for that I am sorry, but honestly without all of your thoughts and prayers I don't think I would be here. You people are amazing and I can not tell you how much I look forward to reading all your entries from friends, family and even strangers. It is awesome and helps me in a way that I can not explain. It puts me in a good mental state and makes me remain positive no matter what is going on. Basicly all you freekin people ROCK!!!!! I love each and every one of you. I know I am a cheeseball, but I have turned into one since I have been sick. Nothing goes unsaid with me and emotions do not ever remain in check. I sware Katy's stem cells have turned me into a bit of a woman. I cry at everything because everything now means so much to me when before it was just normal every day stuff that I took for granted. I could sit here all day and ramble on about philosophies and how this illness has made me a better person but I will spare all of you the boredom. So for now thanks and I love you!
I have been helping Becky at the store more trying to get business to pick up. The move to the new store is complete and it is so awesome, but the foot traffic in the door has been a little slow. Whether that is due to the economy, people not knowing about the store or what I don't know. Becky has been taking a metalsmithing class at the Baum School of Art and has been making some amazing pieces. I keep telling her that her jewelry will make it to stores around the world some day like in NYC. I say that she is going to be the next David Yurman if you know who that is, but it is a big compliment. We are just trying to get people in the door right because once they are in they love it. There is something for everyone. We also finally got the website finsihed and are trying to increase web business also , which would be nice. If we could get picked up by someone to be a retailer of her pieces she would be all set. Well, check out the store and her creations at www.hopecreationsjewelry.com . Her pieces are one of a kind.
I have got to stop rambling on and on. Thank you, thank you, thank you to all of you. I am doing okay taking supplements, drinking essiac tea, drinking acia berry concentrate and staying positive, but we shall find out on April 14th what is really going on. Also, don't forget to watch The Big Give on April 6th at 9:00, you might see someone you know. We are so excited to see it ourselves. Take care and god bless.
Thanks,
Mike, Becky and the girls
Did anyone watch the new ABC show last night (Sunday night) Oprah Winfrey presents "THE BIG GIVE"???? It is an awesome new show about philanthropy. It's like the Apprentice meets Extreme Makeover with the Amazing Race's film crew to make it even more exciting!
If you watched, you may have seen a handsome fella you recognize on the previews for upcoming episodes!
"Hey Mike...How about a new truck?"
We want to THANK Mike's sister, Katy, for all she did and the nomination! To everyone who wrote into Oprah and Harpo productions on belhalf of us last spring, Thankyou! Thank you for caring enough about our family to take the time to write. They listened.
Mike has had 4 years of pain, cancer treatment and a hell of a battle and a wieght was lifted from us. People don't seem to always understand how hard this is. Emma is only 7, which means that for more than half of her life, her daddy has been really sick with cancer. Harpo Productions created opportunities for our girls, that could have never happened if it were not for The Big Give and the contestants on the show! Sometimes, good things really do happen! Thank you everyone.
And if you have no idea what I am talking about....you just have to watch every Sunday night..9pm...ABC..the new, AWESOME reality tv show...."The Big Give" and on an upcoming epsiode, you just may recognize a family you know! And yes...we are routing for a certain one, of the ten contestants, but I am not sure we can say who yet. I can give you a hint...the Dot-com cutie! And the pateant queen is pretty amazing too!
THANK YOU!!!!!!!!!!!!!!!
We love you all!
Becky, Mike, Kylie, Mya and Emma Machinski
I wanted to share a cool thing my mother 'n law just saw. Our local paper, the Times News, had a great article in the paper on February 18th in the Lifestyle section. In it, they annouced that the American Cancer Society was having a telethon on April 5-6th and that they were looking for nominees for the Annual Courage Award. I thought..."This is Mike"...the article read
"The nominee should be a person who has maintained a positive attitude and whose story can give others hope."
If you want to nominate Mike for this courage award...you can submit a nomination to Pat Haughton at 111 West Ridge St. in Lansford, PA 18232 or to ginger65@ptd.net. You will need to include why you feel Mike should be nominated as well as this basic information:
Mike Machinski, age 35
70 Ridgeview Drive
Lehighton, PA 18235
484-225-6655
Diagnosed with Stage 4B Hodgkins Lymphoma 3/15/2004
Currently battling re-occuring lymphoma in lymphatic system, bone and lung.
I think it would be so cool if they got a whole bunch of nominations for Mike. I know I am biased, but I think he is the most courageous guy for going through all this.
Mike is finally feeling better from this virus that knocked him off his feet. We had him into the infusion area at the Cancer center on Thursday and Friday for hydration and IV meds. He actually ate dinner last night. We are worried about how thin he is. But, he is feeling better and his blood work came out better this week. Still low, but not drastic, like last week.
Thanks for checking in on us!
F.Y.I. I heard there is a cool new reality TV show called "The Big Give" starting on ABC on Sundays nights at 9pm beginning March 2nd. Just thought I would pass that on. (Smiles)
Love,
Becky
The docs are not really sure why his counts are so low so of course, that is ticking Mike off that he has a "team" of docs standing around him, all without answers. And what is completely annoying is that his oncologist can not seem to find his way one building over to see Mike.
Freakin Dr. Friedman.
The kids are nervous. Whenever Mike goes into the hospital, the kids get real worried. Mike is neutropenic (low immune system) so he really can't have many visitors, so Mike is really going out of his mind. We don't want to bring the kids in to visit since Mya has been sick with the flu and Kylie & Emma could be carriers of germs from school. Keep him in your thoughts.
Thanks,
Becky
Thank you for checking in on us. I never updated the journal on Mike's visit to the oncologist so I thought this would be a good time to do so. As many of you know, Mike has been in the hospital for the past couple of nights.
On January 30th, Mike and I met with Dr. Porter, his oncologist at the University of Penn in Philidelphia. We occasionally visit Dr. Porter to make sure/ verify that everything that their doing with him at his oncology office in Allentown is awright. Dr. Porter sees more reoccuring diseases there in Phili. Mike's recent PET scan showed that his cancer had spread further into the lung and increased in other areas. Porters suggestion was for Mike to have a DLI (Donor Lymphocyte Infusion) which is essentially more stem cells from his donor (his sister, Katy). Before the DLI, Mike would need more chemotherapy and this is the last thing that Mike wants, is more chemo. He is pretty against it. Plus, the last time that he got stem cells, it was rough on both him and Katy.
Right now, Mike can live a somewhat normal life for a few hours each day and he doesn't always feel sick, where when he takes chemo, it totally wipes him out. The DLI would be risky because it could make him very sick. OR....it could put his disease into remission. It is a catch 22.
Dr. Porter called Mikes disease, "bulky disease"..he has it in his lymphods throughout his body, its in his bone as well as the lung. Porter said that Mike's disease has been smoldering and grows in spurts. He is afraid it is going to grow into a blazing fire and he wants to do the DLI before Mike gets to sick to have more cells. If he does have the infusion, it will generate Graph vs. Host again and this could cause infection which could be very dangerous. To say the least, it is alot to think about.
Mike and Dr. Porter agreed to let Mike continue his Vitamin C infusions for the next month along with his organic diet and after another month of Mike going the holistic route, if his next PET scan still shows growth in his cancer, Mike agreed to have the DLI.
As for now, Mike is currently in the hospital with a low wbc count and pneumonia. He came down with a virus (from one of the kids) and his body was not strong enough to fight it on his own. He is in Lehigh Valley Hospital where they are administering IV antibiotics for him. We were hoping that he'd come home today but he couldn't keep down the oral meds so they had to keep him overnight again. His white blood cell count was down to a 1.5 and had slowly increased to a 2. His blood marrow reproduces very slowly. His chest x ray showed signs of early pneumonia.
Never a dull moment. Mya has now missed 4 days of school with her virus. Luckily, we get help from each of our mothers. I have been taking care of the gang and haven't been at the shop at all this week. Oh well.
Sorry it wasn't a great update. But, it could always be worse. Mike will be ok...hopefully we'll have him back home soon.
Love,
Becky
I wish I could write that Mike had a good visit today at the docs, but unfortunately, it was not. The PET scan results showed that he has a 1.5 cm (about 1/2 inch spot) inside his lung. Even though it is inside his lung, it is still considered lymphoma, not lung cancer.
I am very upset.
In addition to the lung, he has several other spots in his chest, on his ribs(right and left side) and basicly all over in little amounts in his lymphnodes. His hips and spine have alot of scar tissue on the bone, in addition to multiple lymphoma spots. His body is very aged beyond his years making it so hard for him to get around at times.
Mike said that he is not going to get upset about it, he said because that won't make him get any better. He is going to continue his Vitamin C IV injections and regroup on his commitment to eating organic. I wish eating healthy was not so damn expensive. I have charts up all over the kitchen as to what he can eat for snacks and meals so it is a bit easier for him when noone is there to get his food for him.
The doctor said today that the lung spot explains the burning in his chest and the short windedness.
The docs really could not give us any solid answers since his cancer is so unknown in the course it has taken. The anniversary of his stem cell transplant will be 3 years this Valentines Day. In March, it will make 4 years since he was diagnosed. I don't think the kids remember a time where their daddy didn't have a cancer.
Mike said that he needs to have his faith in something and so he wants to believe that the diet and Vitamin C will keep him going. His body, as he says is just toast. But, as Mike says he is still alive and still here. It can always be worse. The doctor said to keep doing what he is doing. I hope that Mike can be an inspiration to everyone who has read his story or met Mike. He still coaches basketball, he is still 150 percent involved in the lives of all three of our girls, still drives everywhere, still helps me at Hope Creations, occasionally delivers flowers for our friends at the local flower shop, etc. etc. You'd never know by looking at him that his freakin PET scan lit up like a God damn lite brite toy with cancer. He is amazing in his strength to keep going every day when most mornings he has diffulty lifting himself from bed and bending over to put on his socks. The doctor said today that in most cancer cases, when the cancer is this bad, it would have already spread throughout the entire body and hit an organ by now. They are in "unchartered grounds" with Mike. He is a survivor. This is when his stubborness comes in handy!
I can't write anymore. I am to sad over this f***in spread of this stupid disease.
Keep praying!
Love,
Beck
Well, I have had some reguests for an update so here is one. Christmas was great and hopefully the new year will be as well. I hope all of your holidays were great and I hope that all of your new years are great and bring all your wishes and dreams to reality.
I have been having symptoms that I wish I wasn't having again so I am pretty worried and upset about it. I had a PET scan on Friday the 4th so I am waiting to hear the results. Nervously waiting. I definitely can feel something in my chest and I am worried about my spine and left hip because I think I it feels like something is going on there also. It is just starting to get rediculous. I am so sick of it and so sick of waking up feeling like crap every single morning. I can't explain how it feels to feel so sick, tired and in so much pain that you can barely move in the morning after you have rested all night and that you should feel rested and well when you get up. You should wake up ready to take on the day. I just get so down every morning waking up feeling like this and worrying about what is going on. I am so nervous about my PET results, so nervous. I want to move on, get better and be able to go back to work so that money is not constantly an issue and so i can feel like a man that can support his family and take care of them. That in itself gets as old as anything. I just feel like not I only can't I take care of myself but that I am not able to support and take care of my family, which is the most important thing in my life. I just wish like so many other people wish money was not such an issue in life or that it grew on trees....ha-ha!!!!
Becky is taking good care of me. We have got me back on the extreme organic/alkaline diet, almost like a macrobiotic diet. She went shopping today and has listed what snacks and foods that I can eat on the inside of the food cabinet. She is doing things to make it easier for me. It is just so hard to have to shop for the expensive foods and then prepare all of it as well. There is just spo much work involved with it. The price they charge for it you would think that it would come with a chef that would come and cook it for you. That is one thing I would love to have....a chef to cook for me and then I would definitely eat right. I totally think my cure lies in the diet. I think foor and pH is going to cure me. I have to believe that because I thik the medeicines have proved that they are not going to be a permanent answer. I gott a believe in something and have faith that it will cure me. So back to being on the not so good dedicated diet.
I want everyone to stop for a minute and say a prayer for everyone that you know that has cancer pr other health issues in their life. I know so many people that have cancer and that have just found out recently and have already passed away. It is not fair and not right !!!! God bless all of you with cancer and stay positive. There is something that will fix everyone, you just have to find it. Don't give up, don't ever give up! Also, I want to say thanks to my new friends from the holistic center that I go to. They have done more for me then they realize by just talking. Gloria and Carolyn are my new therapists/friends that I see every week while we all get our vitamin C.....thanks ladies.
You all are going to stop asking me to update this site if I keep writing so I better stop for now. I apologize for being so negative, but writing on here is also therapeutic for me. It lets me vent my frustrations as well. So thanks to all of you and god bless you all for the new year. I love you all from the bottom of my heart and you guys always pray for me..... I want you all to know that I pray for all of you as well because of what you all do for me emotional, physically and mentally. Thanks, take care and keep those hands up so you can keep fighting and kicking butt along with us. See ya soon.
Mike
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