08/31/09 Sixth Week of Treatment

08/31/09 We are coming home, Joe was discharged today. The doctors really wanted to get him home so we could be with family and we could properly be able to mourn the loss of his mom, and she could be laid to rest. Going home is bitter sweet, we can't wait to be home so we can see our families but knowing my mother in law is not going to be there has made it real hard. I keep finding myself wanting to call her to tell her we are coming home. I try to remember she is with our Lord now, at peace and no longer suffering. Joe received good news today he is now making his own platelets over the weekend his count went from 47 to 150 that is huge and his white blood count went from 2,300 to 5,100. So once we are home Joe needs to see his hematologist within the first week we are home, then he will see him every two weeks for blood draws and to monitor his progress. The next 6 -12 months are crucial that Joe does not get an infection. So we will be very diligent on avoiding exposure to germs and especially anyone with colds, flues or any other sickness that is contagious. Also he can not be exposed to anyone who has been vaccinated with a live vaccine or chicken pox. If someone is vaccinated with a live vaccine Joe can not be with that person for eight weeks, this includes the flu vaccination that is a nasal mist, the shot is ok. Joe will need to have all his childhood vaccinations repeated after one year from his stem cell infusion. Well we still have along road ahead of us but Joe is on his way to recovery on February 22nd, 2010 we will return to Boston and Joe will repeat all the test he originally had when first diagnosed including the bone marrow test. We again will wait for that phone call to come on Friday, but this time it will be to find out if Joe is in complete remission or if he will need additional treatment. I will continue to pray everyday for him to be in complete remission and hope that is God's plan. I am so very proud of my beautiful husband he has been so strong through this, even when things got real tough he remained strong. I love him so very much and will continue to be at his side through this journey. I need to say that the doctors, nurses and staff at Amyloidosis Research/Treatment Facility at BMC are some of the most compassionate people I have ever met and can never thank them enough for their support and care that they gave both Joe and me. Well we will see you tomorrow, God Bless and we love you. Thank you all for your support, love and kindness through our journey. I will continue to keep you updated on Joe's progress.

08/30/09 Fifth Week of Treatment

08/30/09 Well we had the weekend off from the hospital, both of us did not feel great yesterday I had a headache that just would not go away and Joe was real tired and his legs were sore and he still has the rash. I worked on packing up some stuff that we would not need before we leave. Tomorrow we will know when we are leaving, I have my brother Tom coming by train tomorrow so he can be here to drive us back to Syracuse when we get the OK. Joe does not want me driving us back, he thinks it is to much for me. Today we both were feeling better, so we went for a walk early it was sunny and warm around 75 degrees. The nice thing is once we get outside and in the open area away from people Joe can take his mask off. Joes legs are still bothering him, the rash though it still is covering most of his body it does look like it is getting better. I was thinking today that I spend most of my day getting Joes pills ready he has pills to take at 7am, 8am, 12pm, 2pm, 3pm, 5pm, 7pm, 8pm, 11pm, and 2am. The 2pm and 2am will go away once the rash does because that is benadryl. At least we are down to eight different pills, better than the fifteen we started out with. Tomorrow we will find out which ones we will be going home with. Joe's sister Dona asked that I let everyone know that if they need information on Joe's benefit or want to volunteer to give her a call at 315-622-4872. Ok so I will let you know about tomorrow, need to go rub Joe down with some Aveeno for the rash and deep heat for the leg pain. Good Night, God Bless and we love you.

08/28/09 Fifth Week of Treatment

08/28/09 Joe is feeling a little better today his legs are not aching as bad as yesterday, the rash as not gotten any better and his temp is still running at 99.8. The good news is they did take the catheter out of his chest today, which is a good sign that we will be going home some time next week. They told us today they will decide on Monday when we are going home it has a lot to do with the rash. Hopefully it will get better over the weekend. So I am going to start packing up the apartment in hopes we will leave by Wednesday. Joe still has a long road of recovery ahead of him but it will be nice to be home while he is recovering. They are going to go over all the precautions we will need to follow once home. It will be a few months before Joe will be able to be out without a mask or in large crowds. He will need to avoid hand shaking, hugs or kisses from people so don't be offended is he seems stand offish. With the H1N1 flu season coming up, it is a very scary time for us with Joe being still so susceptible to germs. We will need to wash our hands with soap and water several times a day and use hand sanitizer in our house along with any visitors who come to the house. They are going to go over all this and more on our last day, Joe will be given several copies of his medical file so he can give it to every doctor or hospital he has to visit until he returns for his 6 month visit. Well it will be nice to be home soon, but I want Joe to be well enough to come home so I am going to wait and see what the doctors say on Monday. We love you, God bless.

08/27/09 Fifth Week Of Treatment

08/27/09 Sorry you did not hear from me yesterday Joe's not feeling well, his legs have been aching so I was massaging them helping him relax and it got late. We were both already wiped out from the emotional stress of the last couple of days. Joe is also running a low grade temp of 99.8 and has rash all over his body. They took a biopsy of it off his back today to see if it is anything more than a rash. His lips and eyes also look swollen. They want to try and get Joe home next week, so he can be with his family. Besides the leg pain and the rash he is doing pretty good his levels are coming up, today he did not need blood or platelets. Tomorrow if he does not have a fever and his levels are still good they are thinking of taking out the catheter from his chest. Boston is crazy right now with Senator Ted Kennedy's funeral being two miles down the road from us, with five presidents coming to town driving is going to be crazy tomorrow and Saturday. Well I almost made it through the whole treatment without my jeep getting hit in the parking garage, when I came out today there was a scrape in the back bumper, no dent thank goodness. The other day we got to meet the founders of the foundation Secure Harbor, these are the people who sponsor the apartment we are staying in. Tim and Connie Hornbeck, Tim is a Amyloidosis patient who also went through a Stem Cell Transplant. Please take a few minutes to check out the website Secureharbor.org, Joe and I will be big supporters of Secure Harbor once Joe's treatment is completed and he is on his feet again. There also are links on the website to the Amyloidosis Foundation and the Boston Medical Center. Well we hope to see you soon, God bless and we love you.

08/25/09 Fifth Week of Treatment

08/25/09 We had some very devastating news, Joe's mom passed away this morning. It was the hardest thing to have to tell him especially in his condition. We are both taking it very hard, but Joe knows his mom would of wanted him to stay on track of getting better. It is very difficult to be away from home and family right now. Please pray for my mother-in Marie that she may rest in peace and for us and all of her family. We love you.

08/24/09 Fifth Week of Treatment

08/24/09 I can't believe we are starting our fifth week. I did forget to mention one thing on yesterdays blog, the doctors wanted Joe to get up and start walking a little. So on Saturday morning when I left to go take a shower I told him when I get back he had to walk he wasn't actually thrilled about this so, I brought back his Yankees pj pants. Well the night before the Yankees beat the Red Sox 20 to 11 and sure enough that got him out of the bed, we strolled up to the nurses station Joe in his Yankees pj's and boy was everyone surprised to see him out of bed and walking until they seen Joes pj's then the teasing started, so Joe says to the nurses in the lowest of voices because he is still so sick "don't worry I am wearing my Red Sox boxers" of course this got a big laugh. Well today we had to be back at the Stem Cell Treatment Clinic at 8:30, we did not sleep great last night up and down a lot due to the C-Dif. When we got back from the hospital on Sunday, I helped Joe take a bath and he wanted to shave because he hadn't all week. Well he decided to shave his mustache and beard off so he is all clean shaved now. He has started to lose his hair so he figured his facial hear was next. He is not upset about losing his hair he said it was the least of his worries. I am going to miss it because I rub his hair at night when I am reading in bed, I will have to rub his head instead while we are waiting for it to grow back. So great news today, it is day +11 this is how many days has passed since the transplant and Joe's white blood cell count is up to 2300, normal is 4,000 to 10,000 his red blood count is still low so he had another blood transfusion today. The doctors told us today if Joe keeps on progressing the way he is with no other complications we will be able to leave for home in 7 to 10 days. It will still be several months before his immune system is strong enough to be out in public without a mask and has all his energy back but we will be home. I am slowly getting Joe to eat today he had toast, rice and two carnation instant breakfast made with lactose free milk. I have to try and get 32 oz of fluid along with small meals in him so he does not dehydrated again from the diarrhea, which has gotten a little better but will be awhile before it is gone. The docs were really happy to see Joe doing so much better today from when they last seen him at the hospital on Friday. They said once the white count comes back it starts fighting off any infections so that is why he is doing so good his count almost tripled from Sunday. I want to take a minute to thank everyone for all their prayers, best wishes and support this would of been so much harder without all of you. We love you and see you soon, and don't stop praying.

08/23/09 Forth Week of Treatment

08/23/09 So it has been quite a week, Monday after we came back from the Stem Cell Clinic I told you that Joe was starting to get very ill, well that night he continued to get worse he was having many bouts of diarrhea and getting very weak and dizzy but still did not have a fever. I was giving him Imodium every couple of hours. We fell asleep around 1:00 am, and I told Joe if he had to get up to make sure he woke me because he was getting wobbly on his feet and I had to help him walk the last time. Well he didn't and he tried to get to the bathroom on his own and he ended up falling as soon as he got out of bed. I woke up to this big crash and to find Joe on the bedroom floor, he had bumped his head on the side of the bed. He was very disoriented for a few seconds. I was half out of my mind, first to be woke up to that loud crash and then to find Joe on the floor. I start screaming for my sister Lorrie who is out sleeping in the living room, and all she can hear is me crying out Joes name, I scared her half to death. This all happened at 3:30 am, so we get Joe up and check him over and he is ok just a little red rub mark on the side of his head no bump thank God. Get him back to bed, Lorrie goes back to her bed and I get in bed with Joe now at this point I am not going to go back to sleep and I am getting up at 5:00 am anyways we need to be back at the stem cell clinic by 8:00. Joe falls asleep and seems to have finally stopped with the diarrhea. At 5:00 I get up to get in the shower, Joe is sound asleep, still I tell him not to get out of the bed without help and he says that he feeling a little better and will not get up without me. So I jump in the shower, wash as fast as I can and I get out and go and check on Joe, good still in bed. He ask me for a ginger ale and I leave to go get it and I am in the kitchen and I hear a big crash again, I go running and find Joe on the bathroom floor I just about lose it at this point I am so upset I want to cry, I feel like I am going to breakdown and I again scream for Lorrie. This time it is a little worst he has hit the tile floor and the tub. His leg is bleeding, he said he did not hit his head but more or less fell into the tub because he was trying to catch himself. Ok now I am worried with Joes bleeding problem and the cut on the leg not to bad but there is a big bump behind it. Also I am not totally convinced that he did not hit his head. Well I am not going to take any chances so I call the doctor to see if I should bring him into the emergency room. Now remember that Boston Medical Center is made up of couple separate hospitals and medical facilities. They have already told me if I need to bring him to a emergency room I need to go to the East Newton Hospital but I need to call the doctor first so they can call ahead to get a sterile room ready for Joe who has no immune system left. Well I go over everything with the doctor and she pretty sure that Joe is one dehydrated again from all the diarrhea, two his blood pressure is very low from being dehydrated which is causing all the dizziness and light headiness. We discuss his leg and the bleeding has stopped. Well we make the decision by the time we call a ambulance get to the hospital emergency room, get a separate room and wait on the docs and attending docs that we are probably better off bringing him straight to the Moakley Bldg to the Stem Cell Transplant Clinic were he can be examined by his own doctors. So I get Joe washed up and dressed because he is to weak to do it himself and Lorrie and I have to both walk him to the elevator and down to the parking garage. Once we get to the Moakley Bldg we grab a wheel chair for Joe. Well sure enough he is dehydrated and blood pressure is extremely low so they start the fluids ASAP and they check out his leg and the rest of his body from the fall all is ok, his leg has a major abrasion on it. The decision is made immediately that Joe will be admitted to the hospital. Well a few other factors weighed into why he was so weak when they got his blood results back just overnight all Joe's levels dropped to just about zero. We spent the most of the day at the Stem Cell Clinic waiting for a private room to open up over at Newton. Which was ok because the Stem Cell Clinic is like a miniature hospital and Joe has his own nurse and his doctors are right there. Poor Joe is still having constant diarrhea and the doctors are getting concerned that it may be more than just the effects of Chemo so they do a culture. In the mean time we are transferred by ambulance to Newton which is strange because it is only two bldgs over we probably could of walked and got there faster. So they get Joe in his room and by this time Joe is so wiped out. They start him on IV's and the whole night every hour Joe is having to be helped to the bathroom and he is just getting weaker. Lorrie and me stay the night with him sleeping in chairs, I am right up next to the bed because I am still freaked out from him falling and he is still being so impulsive and just trying to get out of the bed by himself when he can't even hold his self up. The results come back and Joe has a bacterial infection in his intestines called C-Dif. So this is adding to the side effects of chemo. The next three days not much changes he just seems like he is not going to get better, he is sleeping around the clock only getting up to use the bathroom, which is about every hour. I stay at the hospital only leaving to come back to the apartment to shower, I send Lorrie back to stay at the apartment to keep things going there for me and to help me with things when I come home to shower. Lorrie would of stayed at the hospital with me but Joe is so sick he only wants me with him. I call my brother Tom to come one day early to help out so he could stay with Joe when I leave because he is so weak I don't want to leave him alone. I send my sister and brother home on Friday, Joe is starting to show some improvement and Lorrie has been here almost two weeks. On Friday Joe's counts start to come up a little, .003, Saturday they are up to 400 and Sunday 800. It was great to watch the improvement in him, the doctors & nurses kept telling me that as soon as his white count started to come up he would improve quickly. We get to leave the hospital on Sunday Joe is still very weak but a lot better than he was and the diarrhea is still constant, he is on meds for the infection but it is going to take about a week for it to start working. He is eating very little and I am trying to keep him drinking fluids so he does not get dehydrated again. The nurses and doctors said I did a great job with him at the hospital, he only wanted me and I was trying to keep him from giving up and to stay focus on getting better. It will be great to sleep in a bed tonight and not a chair bed like I have for the last five nights but you do what you gotta do for the one you love. Well back to our normal routine tomarrow, Moakley Bldg to the stem cell clinic. Joe is doing pretty good since we got back to the apartment today, we are getting ready for bed we both hope to get a goodnights sleep. We love you and God bless, we are half way there.

08/20/09 Forth Week of Treatment

08/20/09 Just a quick note Joe was admitted into the hospital Tuesday morning, Monday was quite the night. I have been staying there with him around the clock so I have not been able to blog. He will probably be there until Monday. I came back to the apartment for a quick shower so I wanted to give you all a quick update. He is doing OK now, he has a bacterial infection in his intestines. I will catch you up on the details when we get back. We love you, God Bless.

08/17/09 Fourth Week of treatment

08/17/09 So Joe is really sick, but the doctor said he still will get sicker his levels are still not down to zero. Today he was almost admitted, he was very fatigued and was having bouts of diarrhea all night. He was dehydrated, so they had to Hydrate him before they gave him his last dose of Velcade. Joe is trying so hard to remain strong. I know some of you don't understand why Joe will get so sick from the Melphalan (High Dose Chemo ) that he had to have before the Stem Cell Transplant so I will try to explain . Before you can do the stem Cell Transplant you have to have chemotherapy to destroy the diseased cells in your bone marrow and the rest of your body. This gets rid of the diseased cells in your bone marrow. Later, when you get your stored blood cells back, those new stem cells will be able to take over the job of making new blood cells. So the normal dose of Melphalan by I.V. is 16 mg administered at 2-week intervals for 4 doses, then administer at 4-week intervals after adequate hematologic recovery. So Joe received 200 mg a day administered in two days. Destroying your bone marrow cells with this much chemotherapy leaves your body unable to fight infection. You become very fatigued, and there are many life threatening infections you can get. Plus you become very ill. How are stem cells transplanted? The stem cells travel from the blood bag through the catheter into your blood, and to your bone marrow, where they will begin to produce new cells in 1 to 3 weeks. During this time: You have to take many precautions to fight germs and stay as sanitary as possible. Stem Cell transplants used to be done under isolation but they find the patient does better if they are not kept in the hospital. You are given antibiotics to prevent or to treat infection. Your blood will be tested often to check the levels of red blood cells, white blood cells, and platelets in your body. Joe may need to receive several transfusions of blood cells and platelets until his body begins to produce its own. Early complications usually occur within 5 to 10 days and include: Nausea and vomiting, Diarrhea, Mouth sores, Hair loss. Also bleeding because of severe reduction in red blood cells, white blood cells, and platelets. Infection, such as pneumonia, shingles could develop. So right now I am taking his temperature every hour to make sure it does not go up to 100 degrees because if it does we have to go straight to the emergency room. Once we get home from the hospital each day Lorrie and I are wiping down the apartment with Clorox wipes and we all are constantly washing our hands and using antibacterial hand sanitizer. So I am not sure how the next few days are going to go if Joe gets admitted to the hospital I will not be able to blog for awhile but I will catch up in a few days. We Love you and keep praying for him.

08/16/09 Third Week of Treatment

08/16/09 I am going to make it short tonight, I just wanted to make sure I let you know how Joe is doing. It was another very tough day for Joe, tomorrow is another day of Velcade (chemo) and that will be the end of his chemotherapy. He was able to eat a little today and he has been drinking ginger ale and some strawberry quick milk. After we got back from the hospital, Joe had his G-shot, he slept most of the day. Hopefully he will start feeling better by the end of the week. We love you, God bless.

08/15/09 Third Week Of Treatment

08/15/09 Well today we had to go to the Newton Bldg for Joe's G-CSF shots it was really tough on Joe. He is very exhausted right now slept on and off most of the day. The meds are helping with the nausea, I was able to get him to eat and drink a little today. Lorrie and I spent most of the day doing laundry and making sure Joe was ok. I give him his meds at 7am, 11am, 12pm, 3pm, 5pm, 7pm, 9pm and 11pm. I also take his temp every few hours and check his mouth for sores twice a day. If his temp goes up to 100 degrees I need to take him to the emergency room immediately remember he has no immune system right now and his white blood cell count is almost down to zero. Joe's spirits are a little low today, I have hugged him many times today and told him how much I love him and how many people love and care about him. He really misses home and Duncan, Grandbabies, Kids, Family and Friends. I told him a few more bad days and things will start getting better, Monday is his last day of Chemo. Next week will be his worst week, probably Monday and Tuesday being his worst days and then things should start getting better after that. I told him if I could I would take this from him and go through it myself, it is so hard watching someone you love so much, hurt so much but of course Joe said he would never wish it on me or anyone. Well I am going to go I want to go be with him, it helped him sleep last night when I rubbed his hair for awhile. We love and miss you.

08/14/09 Third Week of Treatment

08/14/09 Things are getting a little tougher for Joe he is starting to feel the effects of Chemo and the Stem Cell Transplant. He is very tired and ill feeling. He has slept most of the day today, we went into the clinic this morning for another dose of the Velcade (chemo) and his shots. They ran his blood test to check his levels. The doctors examined him and said he is doing good so far. Tomorrow we will go into the hospital for blood test and the G-shots. He is still being a champ, but I promised him I would not stay up late and I would come to bed early to be with him and rub his hair while I read so I am cutting it short tonight. We Love you and God Bless.

08/13/09 Third Week of Treatment

08/13/09 Happy Birthday - Today is Joe's birthday this is what they call the day his Stem Cells are given back to him. He had 16,000,000 stem cells infused today that is about three times more than what is returned to the average person but since Joe had such a good collection they were able to return more to him. They will freeze the remaining stem cells and keep them for ten years. Today did not start out to great for Joe he woke up very nauseous and was throwing up before we left for the hospital. I gave him some anti-nausea meds and he rested and had some toast, he felt a little better before we left. We had to be there at 8:00 so they could start the infusion at 10:00. They had to give Joe two hours of hydration and meds for nausea, light sedation and antibiotics. Once they started the infusion they hooked Joe to a heart monitor to watch for low blood pressure and a EKG for heart rhythm and he was given oxygen, all of these are left in place during the whole infusion. Joe was given six bags of stems cells which took about 15 to 20 mins per bag. There are doctors and nurses and lab techs in the room the whole time the infusion is in process. So Joe did great during the whole process, prior to the infusion they had their concerns over his heart but it stayed strong the whole time. So you know how Joe has done his funny stunts each morning with his Yankee stuff well the nurses got him back this morning they had a pair of red socks laying on his bed this morning for him to wear, you know the ones with the anti-skid bottoms. Well they all got the biggest kick out of it even Joe got a kick out of it even though he threw them at the nurses at the nurses station. Joe is pretty exhausted tonight he ate a little toast and some diced canned peaches and went to bed. I have been giving him his meds so far he is doing pretty good with the nausea tonight. They tell us the worst is yet to come. The Stem Cells are frozen with a preservative called DMSO, which prevents your cells from being destroyed during the freezing process. Well this also has side effects one of them is a bad smell that last up to 48 hours, I think it smells like canned cream corn. So poor Joe has this terrible taste and smell in his mouth also. Tomorrow he still has to go back to get another dose of Velcade and will start the G-CSF shots again to help increase his white blood cell count and Aranesp injection will be given to raise his red blood cell count. He may also have to have a platelet transfusion if necessary. All in all it was a good day and Joe is still staying strong and positive. We love you all and keep prayers coming.

08/12/09 Third Week of Treatment

08/12/09 Today was a long day, Chemo was a little tougher on Joe today he got very nauseous, tonight he is doing OK but very tired. Tomorrow is the Stem Cell Infusion, he will get his stem cells back this is the most important day. They call this his Birthday. We had a long day today so I am cutting this one short I will let you know how he did tomorrow. We love you, God bless.

08/11/09 Third Week of Treatment

08/11/09 Well we were up early and out the door by 7:15 am for three of us getting ready we did pretty good. Traffic was not bad this morning so we got to the Moakley Bldg early and up to the Stem Cell Clinic 15 minutes early. Boy did Joe get paid back for all the ribbing he gave out during the Yankees/Red Sox Series. Well one by one the nurses and doctors came in and we were sitting in the waiting area and each one of them had something to say about the Yankees losing the game last night against Toronto and the Red Sox beating the Tigers. He took it in stride though; it actually helped with the nervousness we were all feeling. So we started out with the usual routine of weight, blood pressure and blood test. Then they had to give Joe two hours of hydration and anti-nausea meds before the chemo. Dr. Sanchorawala and Lisa came in and talked with Joe again about everything that would be happening to him over the next few days. They examined him again checked his vitals. He was ready to start the Melphalan this is given over 20 minutes through his catheter, 10 mins prior to starting they have Joe start packing his mouth with ice chip he will continue to do this for a total hour so before, during and after the chemo is being administered. This will shuts down the blood supply to the mouth and protects Joe from serious mouth sores. Side effects don't usually occur right away. They usually begin about 5 days after receiving chemo. They tell us the toughest week is likely to be the week after chemo. Chemotherapy works by attacking the cells that reproduce quickly - both good cells and the bad. In addition to the disease cells, chemo attacks hair cells, and the thin lining of the mouth, esophagus and stomach. The most common side effect are: hair loss, mouth sores, nausea, vomiting, diarrhea, fatigue and low blood counts. Joe will also have a compromised immune system so he will need to wear a mask when he is out in the general public and from the time he leaves the stem cell clinic until he gets back to the apartment and then when he returns to the stem cell clinic each day. He is on several medications for anti-nausea and several antibiotics which I will be responsible to administer several times a day which I have been given a chart to follow and check off as I give them to him. He also has to rinse his mouth before and after every meal with baking soda and water and before bed. Joe has remained in good spirits through most of the day he really hated the ice but once his mouth was frozen it was not to bad until it started defrosting. He was acting goofy singing to the ipod he had Lorrie and me cracking up because he would break out in song (usually a Fergie song) and not realize he was singing so loud because he had the earphones on. Tonight he is a little worn down but not feeling to bad. Well I have attached a few pictures of Joe with the ice and looking like the invisible man or MJ. Also I wanted you to see one of the pages of meds he is on that is page one of the check sheets. Joe gets to do all this again tomorrow so keep praying and hopefully tomorrow will go as well as today. We love you and God Bless.

08/10/09 Third Week of Treatment

08/10/09 Well after a nice quiet weekend we hit the road running it has been a long day today. Joe wore his Yankees pants and crocks to the Stem Cell Clinic today and they were a big hit. All the nurses and doctors thought Joe was very brave to wear them after the Yankees swept the Red Sox in the four game series. I dropped Joe off in front of the Moakley building and told my sister Lorrie to stay with him while I parked the car. I did not want him to get jumped by a ticked off Red Sox fan. My sister is staying with us for two weeks to help out. Well Joe had another dose of the Velcade (chemo) today and tomorrow and Wednesday is the Hi dose Chemo/Melphalan. We also had to go see the Cardiologist, to evaluate Joe's Atrial Fibrillation for tomorrow. He thinks Joe should do okay but there are some risks but he will be there to monitor Joe through the Chemo and Stem Cell Transplant. Joe is having some stomach cramping tonight and we are all a little nervous and scared about tomorrow. I am sure tonight will be a sleepless night for both of us but we have had long talks and we know in our hearts that Joe is going to do very well through this. I will try and update you all over the next few days but I am not sure what is going to happen. If I don't get back to you tomorrow I promise you will hear back from before the end of the week. Joe received a special package today in the mail, Kurt Busch sent him a autograph picture of himself. My brother Tom had written to Kurt Busch's admin (for you non Nascar fans he is a driver) telling them Joe's story and how Kurt was Joe's favorite driver and if there was anything special they could do to lift his spirits, Joe thought it was a prank at first when he seen an envelope from Kurt Busch. I want to take a minute to thank everyone for all your doing to help Joe and I out while we are here in Boston and with all the time and effort you are putting into the benefit for Joe. We love you and keep praying.

08/09/009 Second Week of Treatment

08/09/09 Wow I can't believe we have been here for two full weeks already. Joe woke up feeling pretty good today. We have company today my sister Lorrie and brother Tom are here. Lorrie is staying here for two weeks to help out. My brother Tom drove her here and will leave tomorrow. So we all walked to Shaws grocery store which is not to far away about a 10 minute walk, I don't usually go to Shaws because Joe does not like me to go by myself. We stocked up on some of the foods Joe will be able to eat after his Hi dose chemo (Melphalan) he will receive on Tuesday and Wednesday. He will be on a Neutropenic Diet (low bacteria) so we got some of his favorite Hungry Man Meals and a few Marie Callenders Pot Pies and Popsicles. He is better off eating processed food that is individually packaged less chance of bacteria. So tomorrow is another day of Velcade and the Cardiologist and then Tuesday and Wednesday Melphalan and the big day Thursday his Stem Cell Infusion (birthday). They tell us to take one day at a time so we don't get to overwelmed. Well another pretty quiet day, keep the prayers coming because Joe has a huge week ahead of him. Go Yankees.... another big game tonight against the Sox could it be a sweep. We love you and God Bless.

08/08/09 Second Week of Treatment

08/08/09 So we stayed up last night watching the Yankees game, well I kept dosing off, but Joe did he had the T.V. on in the bedroom but he made sure he woke me up when A-Rod hit the two run homer to win the game in the 15th inning. Wow. Well he is feeling pretty good after the first dose of Velcade (chemo) a little bit of aches in his joints and back but no nausea. Yesterday chemo was an injection in his cath line with IV. They also gave him some long lasting anti-nausea meds. Well we have the weekend off so I caught up on two loads of wash and Joe wanted to get a hair cut he wants to keep it real short so when it falls out he won't have to deal with it. We have a barber shop right in the galleria mall below us, the bottom block of this building is a galleria mall it has everything from a CVS to hardware store, post office and little store front food shops. So we did are usual routine to get ready to leave and walked down to the barbers. It took about a whole five minutes to cut Joe's hair since he is keeping it real short anyways. It was such a nice day and Joe was feeling pretty good and he can still be around people without wearing a mask we decided to go for another walk. We had to be back by four to watch the game, Joe decided it was probably a good idea not to wear one of his Yankee shirts and put on his Boston Celtics T-shirt. We walked for about 3 or 4 miles round trip we took a different direction this time a little more site seeing. Joe did real well he was a little tired but not to bad. Yankees win Theeeeee Yankees win! Yes game three the Yankees win again, Joe can't wait to wear his Yankee PJ pants Monday to the hospital, that should go over real well. Ok well today was a pretty quiet day so I won't bore you anymore with the details. We love you and have a good night.

08/07/09 Second Week of Treatment

08/07/09 Go Yankees beat them Sox 13-6... you would think it was the Giant and the Pats playing. Boy did Joe have fun with that at the hospital today. Well we did our usual routine this morning and man I am telling you I am getting real good at covering that catheter not a drop of water gets on it. So big day today first day of chemo well it almost did not happen things were going along just fine this morning and I am pulling out of our parking garage and going up the street that our apartment is on and all of sudden it is like the streets of San Francisco sirens coming from somewhere and loud. This cop comes flying off a side street going about 100 Joe yells stop just as I am slamming on the brakes and I swear he missed us by a inch. Almost turned right in to me, well it made for a real quiet ride to the hospital. I think Joe and I both were trying to get our hearts back in to rhythm funny thing was when we were going down to the parking garage we were talking about how with all these tiny spaces I have had to park in I have not had one ping put into my jeep and Joe said you probably just jinxed yourself. Somebody was watching over us. Joe had his morning greeting all rehearsed for when he showed up at the stem cell transplant clinic he walks in a says " How did you sleep last night I slept like a Yankee I mean a baby." This got a big rise out of everybody (for you none sports fans the NY Yankees beat the Boston Red Sox last night). Anyways the usual, weight, blood pressure and put into a room. They had to draw blood and check Joe's levels before he starts his Velcade and the doctor had to come in and examine him, he has been in Afib since we been here so he has to see the Cardiologist/Electrical system doctor on Monday before he starts the 100 mg melphalan on Tuesday. Well today when DR. S examined him no Afib I think from our little scare with the cop car I Knocked him back into rhythm they did another ekg and no Afib but he will still see the cardio on Monday. So now that he is getting the clinical trial his calender changes. Today he got the Velcade (chemo) he is off for the week end. The only side effects he might get this weekend maybe some nuasea and tingling of the hands and feet. Then Monday he will get another dose of Velcade; Tuesday and Wednesday he will get the bad stuff 100 mg Melphalan I say bad stuff because this is the stuff that is going to take his immune system down to nothing and make him real sick in about a week. On Thursday they call this his birthday this is the day he will get his stem cells back. Then on Friday and Monday Velcade again, everyday from the day following his stem cell infusion he will start with the G-CSF injections again to get the stem cells reproducing and pushing them through the blood stream. He will also get antibiotics and red blood & platelet transfusions. This will go on for the following weeks until they see his blood counts back to normal. I will also be giving him a slew of pills they had me fill 15 prescriptions and on Monday I will learn what pills I need to give him when. So if you call me or text me and I don't get back to you right away don't be offended because all my time will be taking care of my husband. We left the clinic today at about 2:00 and had a non eventful ride back to the apartment and I park the jeep in the garage and Joe says honey your getting real good at this your scaring me, I think he is almost admitting I can drive. Well another day behind us and another step forward to Joe's recovery. It's still so hard to even believe we are gong through all this but we are staying positive and Joe is so strong he knows it is going to get harder but he is trying to stay upbeat. Well love you all and keep praying. All your comments are so helpful for both of us so thank you for caring so much.

08/06/09 Second Week of Treatment

08/06/09 Just a quick update and I will fill you in on more tonight the clinical trial was approved by the insurance company and Joe starts his first round of Chemo (Velcade) tomorrow. Yeah!!! Sorry we were so excited that the insurance company approved the clinical trial I wanted to get it out there to everyone as soon as as possible. So today was a real good day Joe woke up a little cranky but that was OK, hey who wouldn't be a little cranky in his shoes. I hardly slept at all last night and got up at 4:30 and put the tea pot on and tried to figure out what my issues were. By the time Joe got up I was fine and was ready to take care of him and anything else that came my way. We did not have to be to the Stem cell clinic until 10:00 today and once we arrived it was pretty comical a few of the nurses there started harassing Joe because they could tell he was a little miserable but he lightened up once he was weighed and we got inside the room. I think we both were just anxious to know if the insurance company approved the clinical trial or not. Oh by the way Joe did another 10,000,000 + stems cells on Tuesday so he is way over the 30,000,000 they wanted. So once they came in and told us that the clinical trial was approved we were just so happy. Let me explain why this clinical trial is so important to Joe's recovery and about primary amyliodosis it is a plasma cell disorder which originates in the bone marrow. The deposits in this type of the disease are made up of immunoglobulin light chain proteins which may be deposited in any bodily tissues or organs. The disease results when enough amyloid protein builds up in one or more organs to cause the organ(s) to malfunction. The heart, kidneys, nervous system and gastrointestinal tract are most often affected. Normally, bone marrow makes protective antibodies, which are proteins that protect against infection and disease. After they have served their function, these antibodies are broken down and recycled in the body. With amyloidosis, cells in the bone marrow produce antibodies that cannot be broken down. These antibodies then begin to build up in the bloodstream. Ultimately, they leave the bloodstream and can deposit in the tissues or organs as amyloid. Ok so with the treatments that Joe is going to receive the Hi dose chemo and stem cell transplant will take care of the plasma cell or the seed it will kill of the amyliods the Velcade (clinical trial drug) will treat the bone marrow or the soil that they cultivate in. So in theory this is what will raise Joe's complete remission rate from 50 to 70+%. Joe's kidneys, nervous system, bone marrow and spleen are affected with amyloid. Sorry to go through all that but wanted to help you understand why the clinical trial was so important to us. Big day tomorrow we start the first treatment of Velcade so tonight was the last night of normal as we know it so we decided to go to dinner, Joe has decided that nobody can do beef the way NY does. He will start his low bacteria diet now. We had along talk about how much life has changed from last year till now and how scared we both are but that we are ready for a fight. You never know how much you really love each other until you are going through something that takes every part of your being to get through. Well we have great family and friends to help us out and lots of prayers. So we love you all and thanks for all your messages it really makes are day to read them god bless.

08/05/09 Second Week of Treatment

08/05/09 So we had today off and it was a nice day we did not end up sleeping in I was up by 6:00 and Joe was up at 8:00 for the second time he originally got up at 4:00 and stayed up until 5:30 watching tv. Started the day out by getting the apartment all dusted and wiped down. Once Joe starts the the high doses of chemo all the surface, switches and door knobs will need to be constantly wiped down with Clorox wipes so I try to do this every day to stay ahead of the game. Well I decided that the disability/insurance paperwork could wait another day I will bring it to the hospital with me, Joe and I needed to do something fun. Joe was feeling pretty good today since he has not had any shots for two days so we decided to do some site seeing. We left the apartment around 12:30 and went walking through the park across the street and over to the Christian Science Center which has a beautiful reflection pool. We walked over to the Prudential Center which has a mall in it so we walked around there and had lunch in the food court. Joe had to rest off and on but he did pretty good. We got home around 3:00 and I did some laundry, Joe rested. I don't remember if I mentioned that Fenway Park is three blocks away from us Paul McCartney is playing there in concert to tonight. Our laundry room is up on the top floor (12th) and if you walk out the laundry room they have a roof top terrace, well we went out there and you can see the upper part off the stadium and we could hear the concert. Pretty cool. Before Joe got sick he was running a horseshoe league, tonight he was going crazy because it was the championship playoffs and his team (our friend Bill ended up taking Joe's place) was in it, well they ended up taking the whole thing so that really made Joe's night. Well tomorrow it is back to our usual routine and I am praying the insurance company agrees to pay for the clinical trial we should know first thing tomorrow and I can't wait to hear how many total stem cells Joe ended up collecting. It is Bed time another early day tomorrow, talk to you tomorrow night we love you and god bless.

08/04/09 Second Week of Treatment in Boston

8/04/09 We had a much better day today Joe woke up feeling pretty good, his back was still a little sore but since he did not have to get the G - injection he felt pretty good. We went through are morning routine rather quickly this morning I think we are adapting to it. The scary thing is my driving skills have greatly improved, if you could see the morning rush hour here it is crazy and I am just like ho-hum instead of white knuckling it all the way to the hospital. Well enough of that, Joe was like a rock star at the stem cell clinic today from the minute we walked in everyone was talking about how he pushed out the 24,000,000 stem cells. It was wonderful nobody has done that many in years so it made Joe and me feel pretty great. It was the same routine first his vitals and than back on the stem cell machine. Today he only had to stay on it until about 11:00. Today's movie was High Crimes with Morgan Freeman and Ashley Judd (Joe's favorite actress) he was hoping to see her naked but no such luck. The psychiatrist came in and checked on Joe, we had about a 30 minute visit with him. Ok the funny thing is Joe has been harassing most of his doctors, especially with the whole Red Sox / Yankees thing and he can usually get them to play along well not so much with the psychiatrist. Anyways you all know Joe pretty well so you can imagine him with the psychiatrist for the most part it went pretty good and he felt that Joe and I were handling everything well. Joe's Stem Cell Transplant doctor; Dr. Sanchorawala came in to talk to us about Joe participating in a clinical trial. Let me back up a minute as some of you may know Joe is a high risk patient for the stem cell transplant due to his Atrial Fibrillation and his bleeding disorder so they are taking many precautions during the treatment process. Well he is doing so good so far they feel that he will now also be a good candidate for the clinical trial that they have in progress at the research facility. So let me explain with the treatment Joe is having now (Hi dose chemo/ stem cell transplant ) the complete remission rate is 50% and remission rate is 30%. If he has the clinical trial along with the current treatment plan his complete remission rate goes up to 70% or higher. What the clinical trial involves is Joe would have four doses of a type of chemo called Velcade given to him for four days before he starts the High doses of 100mg Melphalan for two days then he will get his Stem Cell infusion on the seventh day. They have had great success with this clinical trial they are 4 for 4 for the complete remission of 70% or higher. We have discussed it and Joe wants to go for the clinical trial. We have to hope that the insurance company approves their share because the cost per day of the Velcade is $12,000.00 so we will not know until Thursday if Joe can participate. Keep your fingers crossed and pray on it. Today was a short day we got leave at 12:30 and Joe did so well with stem cell collection and his cath looks so good we get the day off tomorrow yeah!!! Time to catch up on some sleep and all the paperwork that insurance companies require. We will not know until Thursday how many more stem cells Joe collected today but I am sure it was more than the 6,ooo,ooo they wanted from him. So all in all today was a good day, Joe and I were acting goofy today at the hospital and we took a picture of us (Joe is not sleeping just being a goofball). We love you all and your comments are great, I read them to Joe before I start each days blog.

08/03/09 Second Week of Treatment in Boston

8/03/09 Wow can't believe we have been here a week already. Last night was tough not much sleep Joe did not feel well continued to have the chills and lots of bone pain. We need to be up by 5:00 am on week days so we can be to BMC by 8:00 I usually get up first and shower and then get Joe up. He needs to take his meds first and then I have to wrap and cover his catheter this is a process that we have perfected, we use a zip lock baggie that I cut down the middle and slide the tubes into and then I tape all sides down around the edges this way it will not get wet when Joe showers. Joe had a rough morning he has a tough time showering it really takes a lot out of him, this morning he ended up throwing up when he got out of the shower. He said he was exhausted. I had him rest for a few minutes before we left for the hospital, today is a big day... Stem Cell Collection Day. We arrived at Moakley Bldg right on time, now our apartment is a mile away but it usually takes about 30 minutes to actually get there by the time I bring Joe to Moakley and then I have to drive over to the parking garage park and walk back. The traffic is crazy but Joe said I am actually getting pretty good at driving here. We get to the Stem Cell Transplant Center at 8:00 am and they take Joe's BP and weight then they get Joe hooked up to the machine that is going to collect his stem cells. The machine has tubes that hook to the catheter that is in Joe's chest one tube is used to remove blood from Joe and the other is used to put it back in. The blood that is being taken out is ran through a centrifuge which separates blood plasma and the blood product that contains the stem cells and they are put in separate bags. I am sure there is a better medical way of explaining the process but it is late and I am getting tired. Joe's bones and back are still very sore and he is still has the nausea. This makes the thought of laying in the bed for the next 5 or 6 hours uncomfortable. When the doctor comes in to see him we let her know this and she is going to prescribe some pain meds and something to help the nausea. Joe will be on the machine most of the day until about 2:00 then they will unhook him and send the collection down to the lab to count how many stem cells were collected. They prescribe Oxycontin for the pain and Joe is a happy camper after that no more pain. He sleeps on and off and I watch the Devil wears Prada. At noon the Nascar race comes on Joe watches that and I go and get him a sandwich. At 1:30 they unhook him and send his blood down for the stem cell count, this will take a few hours. They check Joe vitals again and he has gained six lbs from the collection, this is mostly fluid so they will need to give him lasix. At about 4:30 they come to see us and we get great news they collected 24,000,000 yes.... twenty four million stem cells this is just unheard of but it explains all the bone pain. The Growth Factor injection were doing what they were supposed to, most people might get half that amount on the first collection. Joe is so happy, it makes all the pain worth it they also tell him he will not need the injections for tomorrows collection and they only need about 6,ooo,ooo more yeah!!! So tomorrow will be a shorter day he probably will only be on the machine for a few hours. I have attached some pictures.

First week in Boston

7/28/09 Went to Boston Medical Center - Moakley Bldg for blood draw to check INR, cholesterol & triglyceride levels. The Moakley bldg is where the Amyloid Treatment and Research Program and Stem Cell Treatment Center are housed.

7/29/09 Today Joe had to have a transfusion of blood platelets due to his INR levels being too high, they will not be able to put the catheter into his chest if the INR level does not come down. We met with the nutritionist today to go over the neutropenic diet ( low bacteria ) that we will need to follow after Joe has his Chemo and Stem Cell Transplant. Bye - Bye blue cheese, fresh fruit and veggies. Hello well done meat and individually wrapped processed food. Triglyceride level keeps going up it is over 500, this is one of the symptoms of Amyloidosis. Before Joe had this disease his cholesterol levels were great. They will change his medication to try and bring his level down. If not the problem of collecting more fat cells then stem cells will be an issue but they say it will not change the treatment plan. After the transfusion was completed they retested Joe's INR and the level came back low enough to do the cath placement tomorrow yeah!!! We met with Lisa Yanarella, NP in the stem cell unit we just love her she went over Joe's treatment calendar with us and all the emergency contact information. Then both she and Dr. Quillen gave Joe a head to toe exam. Long day but Joe is holding up well.

7/30/09 Catheter placement today had to be over at BMC - East Newton Campus at 7:00 am catheter placement went well, very little bleeding. Joe is sore but doing well. I have to keep an eye on it for bleeding if more than a dime size that will not stop with pressure we will head over to the emergency room.

7/31/09 Not to bad of a night last night neither of us sleep very well ...but no emergency. I managed to cover up the cath with press and seal and medical tape so Joe could shower and we had no leaks. Joe starts his growth factor injections today he will have one in each arm. The G-CSF injection helps move the stem cells out of the bone marrow and into the blood stream. He receives two injections because he is given three times the normal dose of G-CSF in order to mobilize enough of the stems cells needed for the transplant. These injections will continue until they have collected the required amount of stems cells (4-5 days). He will receive these injections again after the stem cell infusion. Common side effects of G-CSF are: Bone pain, joint pain, headache, low blood pressure and fluid retention. So today we went to the Moakley Bldg to the Stem Cell unit this is where we will be everyday during the week. Joe said the shots felt like bee stings, not to bad. His catheter looked good, and it made all the blood draws a lot easier. We seen the doctor again talked about a few issues that Joe is having but for the most part Joe is still in pretty good spirits and the nurses love him.

8/01/09 On the weekends we will go to the hospital for Joe's injections this is at BMC - East Newton Campus. Joe was a little achy this morning his bones are beginning to hurt. We meet the nurse on the 7th floor and she checks Joe's weight and blood pressure and then gives him his shots then we can leave. He starting to feel the shot side effects more and more but Tylenol seems to help some. Joe slept a lot today; I caught up on laundry and did some grocery shopping.

8/02/09 We were up early today about 5:30 Joe was having a problem sleeping, just not feeling well; achy and said his back was hurting. His heart has been beating fast from his Afib said he can feel it. We will talk to the doctor some more about it on Monday. Gave him some Tylenol and he laid back down. Left at 10:00 am for the hospital for injections, weight and BP check. We had a quiet day most of the day Joe watched the Yankees game and rested on the bed. We had dinner and he started to not feel well about 8:00 pm very sore all over and started to feel like he was getting a fever and the chills. I gave him some more Tylenol and some hugs and kisses. Joe went to bed early needs lots of rest big day tomorrow they will start collecting his stem cells. We need to be there at 8:00 am and will be there all day until 5:00 pm. We will do this for the next two or three days until they have enough stem cells collected for the transplant. Thank you everybody for your prayers we love you...