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thebostonsix's LiveJournal:
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| Wednesday, May 9th, 2007 | | 8:19 pm |
boston
I took a major step back to normalcy this week by attending my first class in over 2 years. It felt so great to be sitting back in class I didn’t even mind that the classroom had to be 100 degrees. I am taking probability and statistics for engineers and it is great to be back with the same group of kids I was with two years ago. I have gone through such drastic changes over the past two years it is nice to come back and see how little has changed. Jessie has spent this week with my in Boston. We have been walking all over this city the past few days. I feel I have done more walking in the past 5 days then I did in total the previous year. Next weekend, the 19th and 20th I will be in Connecticut for the Waterbury Relay for life. After this I will be back in Boston for the rest of the summer. On the 22nd I have a doctor’s appointment to get the second round of my shots and inoculations. Things seem to really be going great for me. There have not been any major setbacks to talk about. It has been difficult to get back in the swing of normal life, but I am slowly getting there. I hope that by the end of the summer I will be able to go through an entire day without worrying about the cancer and just feel completely normal. | | Monday, February 26th, 2007 | | 1:46 am |
Day 338
I hope everyone in the northeast has enjoyed this return to the bitter cold we have been experiencing. I know I have not. I am feeling better and getting more energy and I want to get outside. Those of you who are in warmer climates, you know who you are, spending you days sitting at the beach I envy you. The past month has been good to me. I have felt the best I have felt since I started this journey a year and I half ago. I met with Dr. Koreth this week in Boston. He was very pleased with my progress. We reduced my medications even further. I have been off the immune suppression drugs for over 6 weeks. I have tolerated it very well. My doctor and I set up a schedule for me to start getting my shots and inoculations. In addition, I am scheduling a meeting with my surgeon to get my port removed. Dr Koreth said I can also start to reduce my restrictions at my own pace. I think I am going to take this very slow. I am going to have to overcome my fears and anxieties of contracting something every time I do something new. For instance yesterday I walked into a pizza restaurant in the middle of the day; it was just me, my friend, and one employee, however I still worried. I worried about breathing in something from the employee, I worried about touching anything for fear someone with a cold had touched it before me. I have to learn to balance my caution with my anxiety. For the longest time it was my doctor imposing the restrictions, however now I have to get over my own barriers I have created. I plan on assimilating myself back to a normal life over the next two months. Then I hope to return to school, at least part time. Lastly, lately I have been receiving thank you letters for donations to various charities made in my name. I want to extend my deepest appreciation for anyone who donated in my name, in their own name, anonymously, or for anyone else. I know from experience that every little donation helps. Likewise, my 22nd birthday as well as my one year anniversary of my transplant is approaching. If anyone wants to celebrate these events please consider donating to one of the many charities I provide info for below or for any other charity that matters to you. Lastly, honestly this time, I would like to thank everyone who is involved with Relay for Life. Whether it is in my community, or across the country the money raised helps many. My girlfriend Jessica Metzger is a team leader down near her school in Florida. If someone wants to help donate to her team the web-address is http://www.acsevents.org/relay/fl/fit . I can get anyone in contact with her if you would like to help. Go Redsox The National Marrow Donor Program – More information can be found at www.marrow.org. This website is a windfall of information on how anyone can help. It also provides all the information on how to become a morrow donor. The Harold Leever Cancer Center Indigent Fund - The Harold Leever Cancer Center is where I have been going for treatment in Connecticut. The Indigent Fun earmarks the donations for those who do not have the financial means to fight cancer. The Leever Center website is www.leevercancercenter.org The Jimmy Fund- The Jimmy Fund supports cancer research and patient care at Dana-Farber. The website is www.jimmyfund.com | | Sunday, January 21st, 2007 | | 1:58 am |
Day 300/303
Day 300 I figured today was as good as any to update anyone following this journal. Today is day three hundred, that means three hundred days ago I received a full stem cell transplant. It is weird to think it has been three hundred days. In some ways it feels so much longer, yet I can’t believe that it was only three hundred days ago that I was in such bad shape. Day303 I have been off my immune suppression medication for little over a week now. I don’t really feel any different, but I think that is a good thing. There hasn’t been any noticeable drawbacks to going off the drugs, I feel like my body is handling it very well. In addition, the medications my dental specialist put me on are helping calm down the pain in my mouth. It is not gone but it is getting better. I will be spending today watching the championship games at Kate and Scott’s place in Cambridge. I am really looking forward to getting out of my house for more than a trip to the doctors. Speaking of which, I have an appointment this coming Thursday. I hope to determine I timetable for my return to normalcy, well not complete normalcy because I do not think I will ever get to be normal again, but at least a timetable to start readjusting to everyday life. GO PATS | | Tuesday, December 26th, 2006 | | 2:54 pm |
Happy Holidays
Happy Holidays, I hope everyone is having a great holiday season. Mine has been great so far. I have had to keep my activities to a minimum, but I have made the most of what I have been able to do. For starters, my girlfriend Jessie came home from Florida on the fourteenth. It has been great having her home for longer then just a weekend. In addition, she was welcomed home by her first nephew, Cole Joseph, who was coincidentally born on her birthday, December 11th. This past weekend has been somewhat hectic. All three of my sisters were home as well as my brother-in-law and my soon to be brother-in-law. I was also able to visit with, albeit for only a shirt period of time, some relatives from both my mother’s and my father’s side. It was nice to see everyone again; it just would not have felt like Christmas if I was unable to spend some time with my family. I was received a number of amazing gifts this year, among which was a Nintendo Wii. My entire family, including my extended family and friends, had been searching for one since thanksgiving and last week through a combined effort were able to find me one. Seeing my friends and family this holiday season has brightened my spirits. I have been feeling well this entire week. My treatment has remained steady since the last time I posted. I last went up to Dana Farber on the 14th. While I was there I was seen by a dentist that specializes in post transplant care. He said I definitely have some graft-versus-host in my mouth; however he said he wasn’t overly concerned about it. In his opinion it should not slow down my recovery which is a huge relief. While at Farber I did not meet with Doctor Kereth because he was home with his wife who had just given birth to their first child. Instead I met with his nurse practitioner. She was very nice and very helpful, however since I did not meet with Dr. Kereth I was not able to decrease my immune suppression drug. I do go back to see him on the fourth of January, at which time I hope to be completely off my immune suppression. I want to thank everyone who has thought of me throughout this holiday period. I want to send a special thanks to those who have made donations to some of the charitable organizations which help those people similar to me. If anyone was thinking of donating but was unsure where to, some very worthy charities are: The National Marrow Donor Program – More information can be found at www.marrow.org. This website is a windfall of information on how anyone can help. It also provides all the information on how to become a morrow donor. The Harold Leever Cancer Center Indigent Fund - The Harold Leever Cancer Center is where I have been going for treatment in Connecticut. The Indigent Fun earmarks the donations for those who do not have the financial means to fight cancer. The Leever Center website is www.leevercancercenter.org The Jimmy Fund- The Jimmy Fund supports cancer research and patient care at Dana-Farber. The website is www.jimmyfund.com | | Saturday, November 18th, 2006 | | 1:28 am |
Turkey Day
Happy Thanksgiving Everyone, I want to start this journal entry by first apologizing for the gap between this entry and the previous one. I wish I was updating more often. However, lately I have felt that I have been making any progress. I have sat at my computer a number of times intending on updating the journal and each time I can not think of anything positive to write so I just end up writing nothing at all. My treatment is going fine. My blood work has shown consistent improvement. Over the past two months I have been slowly reducing my immune suppression drug. I am still on a small amount. I hope to be off within the next two weeks. After that there is a long waiting time spent just monitoring my progress, seeing if any problems arise. I am extremely pleased with my progress thus far, however it just seems as all I can do now is wait and see. I am anxious to get back to anything that resembles my old lifestyle. On a more global note, there are thousands of people like me who are unable to find a bone marrow or stem cell donor. My mother has informed me that she is going to get typed and entered into the bone marrow database. She said her company is sponsoring a bone marrow drive and if anyone wants more information on how to get typed let me know and I will provide more information. I hope everyone has a happy Thanksgiving. I will try to write back as soon as I can and I will do my best not to let such a long time pass next time. Matt, PS The motivation for this letter is in part thanks to Jym’s never ending instant messages nagging me to update ( I could never fully understand why he wanted me to update if I was talking to him everyday, but o well) Also for anyone who cares the AIM sn I am now using is mycancersucks | | Saturday, September 9th, 2006 | | 1:05 pm |
I went and saw my doctor this week. The results for the endoscopy came back. Everything looked good, even better then they had hoped. This isn’t to say I feel any better but at least now my doctors are not worried about it. They have said it is probably just part of the recovery process. This has put my mind at ease to an extent. It is still frustrating not to be able to eat or exercise. I have even started to lose some of the weight I have gained. I hope that this doesn’t last too much longer so I can get back on the path to normalcy. P.S. Those were some very interesting comments. lol | | Saturday, August 26th, 2006 | | 10:20 pm |
Just a quick post to let everyone know everything went fine at the doctors. I wasn’t too bad. In addition I was only in recovery for an hour or two most of which I was asleep for. I don’t have any results from the tests. I hope to have these by the time I go see my oncologist on Thursday. I hope everyone is having a great weekend. | | Thursday, August 24th, 2006 | | 9:46 pm |
Back to Brigham's
I hope everyone is enjoying the last few weeks of summer. It has finally cooled down after that sweltering heat we had for the majority of the summer. This means I have been able to sit outside at night and enjoy the weather. In the last few weeks I have hit a bit of a bump in the road. A few months ago I experienced graft versus host disease which presented as a skin rash. To combat this I was put back onto steroids. The steroids not only help my skin but combated the discomfort I was experiencing in my stomach. In addition, it also helped to bolster my appetite. These steroids were slowly tapered off and as of Sunday I no longer take them. However, when my steroids were reduced to such low doses and ultimately stopped the discomfort in my stomach returned. For the past week or two I have had no appetite and I started to lose some weight again. My doctors believe that the steroids may have been masking graft versus host in my stomach. However, there are a number of other viruses which can be to blame. In-order to diagnose this I am going up to Brigham and Woman’s to have an endoscopy. This is an outpatient procedure where they stick a tube down my throat and poke around a little. They will also biopsy some sites within my stomach. I am assuming it will be similar to the broncoscopy I had 6 months ago. In that case I had a tube stuck down into my lungs. It is very uncomfortable but you can watch what’s going on the screen. Not that I had any idea what I was looking at. I will make sure to write back on Saturday to let you all know I did fine. Football is so close…..GO GIANTS | | Sunday, July 16th, 2006 | | 11:01 pm |
Summertime
I hope everyone’s summer has been going great. Mine has been ok, not exactly the way I would spend it if I had the choice, however I do realize I have a lot to be thankful for. The last few weeks have been ok. My doctor appointments have all yielded good results. My blood levels are staying strong and stable and my graft versus host seems to have subsided. Last Wednesday I saw my oncologist in Connecticut and he was actually amazed at my progress. I am finally putting on some of the weight I lost. It is a very slow process but I have been able to put on between 1.5 and 2 pounds per week consistently for the past month or so. I have also started to exercise on a consistent basis. Nothing major right now just some light weight training, emphasis on light, and a walking routine which is slowing turning into a jogging routine. I still do not have a time table for the future. It varies week to week. I still am unable to have a lot of visitors and I am still on a restricted diet. I have no idea when I will be able to return to classes. I want to be back for spring semester starting in January, however that is three months earlier than is recommended. I have received pictures from the race. I have an entire CD of them. I want to get them online so that I can share them with everyone except I’m not all that computer inclined so I am hoping to con one of my friends into doing it for me. I hope that it won’t be long before I am able to start seeing more people. As soon as I get the green light from my doctor I will be sure to let everyone know. Lastly, I would like to once again thank everyone for their generous support. The donations the VOL5K raised were astounding. It is truly amazing to see how a community can rally around a cause. Thank you Theta-Beta-Sigma 2006 | | Sunday, June 18th, 2006 | | 3:38 pm |
Thank you
Thank you; I do not know what to say other than those two words. The outpouring of support for my recent 5K was unbelievable. I wish I was able to individually thank each and every person who participated. I was astonished to see the sheer number of people who passed my home last Sunday. The effort made by the entire VOL5K team to put on such a perfect event deserves more gratitude than I can possibly express in words. My only hope is that these people realize what a profound impact they have had on my life. Since the day of the run I have felt inspired. I have been eating better and feeling better. The road ahead is still long and arduous, however I know now that I not only have the support of my family, but the support of an entire community. This Thursday I will be taking my bi-weekly trip to the Dana-Farber in Boston to consult with my oncologist. The graft-vs.-host that developed a few weeks back seems to be getting better. Any news I receive from the Farber I will nnot hesitate to pass on. Once again, THANK YOU | | Thursday, May 25th, 2006 | | 10:59 pm |
Day 62ish
I am sorry it has taken me so long to post again. Its weird how the days seem to drag on but they add up. I have been doing ok lately. Last time I went to the doctors was last Thursday (this is the meeting I mentioned in the last post). Everything went pretty well, all of my tests came back ok and I only needed a liter of fluids and nothing else. Since I have been home I have been trying to force the fluids. I take in a lot each day but it never seems to be enough. The worst part of being dehydrated is that I black out for a couple seconds every time I stand up. I am still very tired all the time. It is a huge effort just to do simple tasks like shower or sit at the dinner table with my family for an entire meal. Also, I have found that I need to drink so many fluids to take all my pills three times a day that it makes it very difficult to eat enough. This has resulted in my inability to control my weight. I think I might have finally stopped losing weight (I know it doesn’t sound like a problem to lose weight, but it is when you were thin to begin with and you lose between 30 and 35 pounds). Being at home has its advantages. I get to see my girlfriend everyday. I love being able to spend all of my time with her. Jessie and my younger sister Susie take great care of me during the day making sure I take my pills and get outside and everything else that goes along with recovery. Last weekend was especially nice. We celebrated my mom’s birthday so all three off my sisters were home. It was nice to spend time with them since it is not often we are all in the same place (and I don’t count being semi-conscious in a hospital bed as spending quality time together). The weekend was further enhanced because I got to see both of my future brother-in-laws and my best friend came down from Boston for the weekend. On another front the 5k is only a few weeks away. I am really excited to see everyone that has pre-registered for the event. I am so happy the route goes right by my house. I will be able to cheer everyone on from a distance that is safe for me. It will still be a long time before I can see people on a big scale, but this race is like cheating for me. All of my friends and family will run or walk right in front of me. Also for anyone who read the comments on my last post please know my friend Chip is insane. My next doctor’s appointment is tomorrow. I will not be going to Boston for it; rather I will see my oncologist down here. That should save me a good five or six hours. I will try to write back tomorrow or this weekend. I know I write that a lot and seldom do, but it is very difficult for me to sit at a computer for a long time and type so we will see. I just want to say I miss everyone, and I wish this was all over because it has been too long since I have been able to see everyone. | | Thursday, May 11th, 2006 | | 2:54 pm |
Day 48
Hello everyone, For the past week I have been feeling run down and tired. Yesterday morning I woke up exceptionally dizzy and I blacked out. We called my Doctor and he suggested I come right in to get checked out. He examined me and came to the conclusion that I was dehydrated and I was not eating enough. They took my labs and the labs came back normal. So I received two liters of saline. My Doctor suggested that I go back home to Connecticut and come back and see him in one week. He felt that the change of scenery might be enough to entice me to eat and drink more. And I believe by change of scenery He meant Jessie. Looking back at my time spent here in Cambridge I want to that my sister Katie and her fiancé Scott for taking such good care of me. Furthermore, I thank my friends Dennis and Chris for being there for me both here and when I was in the hospital. I also have received very generous gifts from my friends at 220 Snell and from the Turner Construction Co. I never expected such an out pouring of support, thank you. Also everyone that has contacted me to let me know they can’t wait for the 5K is just amazing. I have friends telling me they are bringing their friends, and their friends’ friends, and their parents. I am so touched by everything everyone has done. Hearing all this gives me the motivation to continue to fight. | | Thursday, May 4th, 2006 | | 9:24 pm |
Day 41
I just got back from my visit to the doctor. He seemed pleased with my progress. We discussed the results from the bone marrow biopsy I had last week. Even though all of the results were not yet in; the results that were back looked promising. The visit itself was rather short because for the first time I did not need to get any drugs administer through an IV. Today I was also able to go outside for the first time in the last few days. The weather here in Boston hasn’t been the greatest. Nothing new happened this past week. My days consisted of; waking up, eating breakfast, taking my pills, eating lunch, taking my afternoon pills, eating dinner, taking my night pills, and going to bed. I have been lucky to have my friends Dennis and Chris up here in Boston. I haven’t really been feeling all that well this past week. Monday and Tuesday I was nauseas all day. Ever since then I have been extremely tired. I’m still not sure what day I am coming home, but hopefully it will be within a week’s time. I have heard that the 5k is really taking off. I am very excited to see so many people are interested. And I would like to thank all of the volunteers working so hard to make this happen. | | Monday, May 1st, 2006 | | 11:17 pm |
Day 38
Hey everyone, this is Jessie. Matt insisted that I write tonight to give you a quick update since it has been a while. He says he will definitely write within the next couple days with a full update. His internet has been down for a few days and the last couple days he hasn't been feeling very well all around. He is still staying with Kate up in Boston, and he is planning on going home to Connecticut this Saturday as long as all goes well with the doctor on Thursday. That's all for now, and we thank you again for all the support! Hope to see you all at the 5k!!! | | Sunday, April 16th, 2006 | | 9:57 pm |
Day 23 Happy Easter
Happy Easter Everyone, It has been almost a week since I last wrote. I am now out of the hospital. I left on Monday. This first week out has been challenging. I have been suffering from nuasa for the past couple of days. Last Tuesday and Wednesday was the worse; I was unable to eat or drink anything. My first doctor’s appointment was Thursday. Since I wasn’t eating or drinking I had to get IV fluids while there. This made the trip to the doctors take around six hours. Today I feel a little better. I was able to eat Easter dinner and spend some good time with my family. I will be going to bed as soon as I finish choking down the rest of my pills. I really don’t know what to expect from the future. I don’t know when I will be going home. I am pretty much living doctors appointment to doctor’s appointment. Right now my main concerns are making sure I drink enough fluids, take all my pills, and try and eat some solid foods. I will write back as soon as I know anything more. Happy Easter | | Sunday, April 9th, 2006 | | 7:42 pm |
day 16
Sorry it has been a week since I have written. Some good news, I might be leaving the hospital as soon as tomorrow. The last few days I have felt a little better. I am trying to adjust to life off the IV. I haven’t eaten in so long that I have to force myself just to get a few calories down a day. The past week has been very difficult emotionally for me. Being in the hospital you feel safe, like if something happens someone is there to help you. I have had to realize that this is no longer the case; I need to be extremely careful to make sure nothing goes wrong. This is also the start of one year of isolation. I think of all I have been through in the past six months and to try to think about the next twelve is overwhelming. I also constantly worry that my cancer is going to come back. I know I cannot think that way but when you have as much time to lay around with your thoughts as I do these things creep into your head. The posts on this site really help me to stay strong, knowing people from throughout my life have faith in me. I hope I can post soon from outside the hospital. It has been 24 days since I have been outside these walls. The change will not be easy but I am cautiously excited. I would like to also take one second to thank everyone at The Dana Farber and the Brigham and Women’s hospitals that have helped me get through this difficult period in my life. Without the dedication of my doctors and especially my nursing and pca staff I would not have had such a rapid response. | | Monday, April 3rd, 2006 | | 10:05 pm |
day 10
Just a quick update for everyone. I’m sorry I haven’t been the one giving the updates but Jessie and Dennis did a great job keeping everyone informed. The last couple of days have been pretty bad. The radiation and chemo have caused intense mouth sores that continue down my throat. They have become so bad that I haven’t been able to eat in the last four days. All of my nutrition comes through the I V. They are so bad tonight that I lost my voice. To combat the problem the doctors have set me up on continues pain med. IV drip. The only problem with this is that it causes severe nausea. It causes me to throw up about twice a day which is even more uncomfortable because I haven’t eaten anything to throw up. Enough with my gross problems. I want to thank everyone for the support. The cards and posts mean the world to me. I am also happy to see people taking such an interest in the 5k run. Thank you to all who have put so much effort into the run already. The shirts look great and the website is awesome. I spend most of my day sleeping, zoning in and out. It is still too early for alot of visitors, but as soon as I feel up to it I will let everyone know. I’m going to get back to sleep now that 24 is over. Goodnight | | Monday, March 27th, 2006 | | 1:07 pm |
Another Update
Hi everyone, its Dennis this time. I figured I would write just so people know more of whats going on, but more importantly so I only have to explain it one more time. Now this is my version of what I remember so hopefully when Matt proofreads it he will correct my mistakes. So to start way back with the cople days after his bday, Matt had to finish off the extra strong radiation and then to begin the transplant. The days with the heavy radiation were a little tough and were when he said he felt the worst. But with these being thelast days of chemo and radiation he was able to grind them out. The actual transplant lasted two days since Kate was just shy of the required amount of stem cells. But she still did great and they easily got enough the second time. So one more big thanks to her for helping out her little brother. Within the next couple days he began to feel better and begin the long process of recovering and rebuilding and immune system. Right now I am in the clean room with him or what i like to call the bubble. It is a more advanced one though as it has a doorway sized opening. The cool part about it is that the room is that one of the walls in it pumps air through it and into the room. This positively pressurizes the room so all the air flows out of the room and nothing comes in. This is the reason there can be a door. But we all still have to wear our masks and gloves so we dont bring in our germs. Although he has been feeling better recently, his blood counts are stil dropping which means he will be more prone to sickness and may feel run down for a while. They must wait for these counts to bottom off and then begin to grow and reach a certain level before he is allowed to go home. Hopefully that will start to happen in the next cople weeks, which will also then be a better time for visitors. So you can just keep in touch with me or chris and well let you know. Lastly just a little bit of bookkeeping stuff, I was thinking of putting my number and s/n on here but I didnt knowif that would be the best idea, soo someone recently made me a facebook thing so u can find me on that if u need anything from me. I also typed this in gloves so sorry for all the typos I didnt correct. I'm sure I will see everyone at the 5k run and of course lets keep up all support. | | Sunday, March 26th, 2006 | | 11:27 pm |
Exhaustion
Hello everyone. This is Jessie. I am just writing a quick update until Matt feels well enough to write himself. I wanted to let everyone know that he had the stem cell transplant from Kate last Thursday and Friday, and everything is going well so far. He is very tired from the radiation last week, and his exhaustion has kept him from writing. However, he is now done with both the chemotherapy and radiation treatments. Yay! Well, I think that is all for now. I, and I'm sure Matt, would like to thank you all again for the continual support throughout this process. It really means a lot and helps very much to keep his spirits up while he fights this battle. | | Wednesday, March 15th, 2006 | | 11:47 pm |
Stem Cells
Sorry I haven't written for a couple days, my life has been kind of hectic. Today was my 21st birthday and this morning I got my last dose of interthecal chemotherapy. I'd like to thank everyone in radiology, recovery, and the 5th floor of Waterbury Hospital for making my birthday morning enjoyable. Tomorrow I head up to Boston to start my radiation therapy. Tomorrow and Friday I will be receiving brain radiation followed by two days of chemotherapy. Then, twice a day Monday through Wednesday and once on Thursday I will be receiving total body radiation. This will completely wipe out my immune system so I will be ready to receive my sister's stem cells Thursday afternoon, March 23rd. For the first two weeks it is going to be very difficult to have visitors. After that, if you wish to come see me please contact my mother or Dennis Cuccaro. There is a very limited time each day that I can have visitors so it needs to be planned out in advance. Obviously anybody even remotely sick will not be able to visit me. I'm hoping to be able to update this journal while at the hospital. However, if my health does not allow it I will not be able to. If this is the case, I will try to have Jessie update it to keep everyone informed. Also, one big thing is that I am not allowed to have my cell phone in the room with me so I will not be able to send or receive calls for 6 weeks. This means I will not be able to have contact with many of you other than through my journal. I've also recently been updated on the 5K walk/run. I am very grateful for all the hard work put forth so far. I would also like to thank everyone who wishes me good luck in my treatment and everyone who wished me a happy birthday. It was very hard being away from everybody, but the phone calls and well wishes online made my day a little bit better. Once again, thank you everyone; your love and support has gotten me this far and with the love and support I pray to make it through this. ps. I'd like to send a special thank you to my sister Katie who for my birthday this year is giving me an immune system. |
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