I apologize for those who have been following JohnnyP's Journey with Cancer. The last time I blogged was when we were in Boston. John had a stem cell transplant on Nov. 9th, it was a success! What an amazing process. The body is such a unique piece of machinery. John had his transplant, and never skipped a beat. The nurses and doctor's were simply amazed by John. Honestly, they would come into his room to check on him and were just amazed at how much strength he had, he had such a positive attitude, which helped the process. The nurse had told me, without a positive attitude it is so difficult. It also helped that I was there. I stayed by John's side every step of the way. I was in a hotel for 21 days. The Hampton Inn in Boston. Just 15 minutes away from Brighams and Women's Hospital. I could have never stayed in RI. God forbid something ever happen to John and I was miles away from him.
John spent 21 days in Brighams and Womens' Hospital...what a great place. The nurses and doctor's are the best. The nurses and doctor's took to John like everyone else does (of course), became instant friends with each and every one of them. I know people say, it's their job. However, this group was exceptional, anything, at anytime. Some of the nurses knew what John needed before he asked for it. Made me speechless.
Time in Boston was stressful, it wasn't always a sunny day. There were days where I just wanted to go home. I can't lie. I missed our lives back in Cranston. Me, my JohnnyP, and Oliver. A small but happy family. Speaking of family. John and I are extremely lucky to have such a great family and friends in our lives.
John's Family, there are no words. His Mom, held up, I really thought she was going to break-down somedays, but she held it together. It must have been hard, watching your son lie in a hospital bed, unable to do anything. There was no magic wand to make John better. Sickness takes a toll on all family members. My sister. Dear God, I thank God I have her. I don't know what I would have done without her. Speechless. I can't thank her enough. She stayed/lived at our house for almost an entire month to take care of Oliver. She drove back and forth to Boston, I can't count how many times. Thank you God for my sister. Our friends. We truly were blessed with a great group of friends. Grant it there are a couple, that don't even deserve a mention in this blog. USELESS is a word for them. They know who they are. Friends, friends, so thankful for our friends. You find out who your true friends are when something like and illness happens. They either retreat, or come out in full force. I am so glad the real friends came out in full force. Dorothy, my dear friend Dorothy. Took my place at the tanning salon, ran it for me while I was in Boston. Kelly, always on email,whenever I need to laugh. Kathleen. My long lost friend. Always on Facebook, chatted with me almost every night on Facebook. Claudia. My oldest and dearest friend, even with her illness, always manage to find the time to call to see how we were doing. John's friend Jeff, another one, has so many things going on in his life, still always managed to call John. Almost everyday. Even came to see him in Boston!
I have to stop and take a deep breath, close my eyes and say to myself "did this really happen to us?"
I am looking forward to 2010....leave behind 2009...and everything that went along with it....no more sickness...all we ask for is a happy, healthy and wealthy 2010....
Tuesday, December 29, 2009
Monday, November 9, 2009
Day 7 in Boston
Today is Monday, it will be 1 wk tomorrow that John has been in BW Hospital. He has been so extremely lucky he has not been sick,sick. He did have a touch of the "poopies", and threw up 3x's. The doctor
came in this afternoon and told John he is doing extremely well taking into consideration the amount of chemo he has had. He told him he looks better than some of his patients.
John's stem cells will be reinfused tomorrow, and Wed. because he had so many cells harvested they need to put them all back in. His first infusion will start at noon tomorrow, another one at 4 pm, and then on Wed he will have his last one at 4pm. His recovery process will start from there....he may have all good days or a mix of a couple of bad and the remainder good. The doctor and nurses stated the same..."everyone is different", each body reacts differently to the medication and the reinfusion process. Since John has done so well so far, he may not have a bad ride. The doctor said to John "ride it out", he is doing great.
The scary part is gone for the most part, now we just need to wait it out after the reinfusion is done.
It will be a waiting process from here on out...there is a light at that end of this dark tunnel...I knew it! I am keep the faith, praying and holding strong...14 days and counting......
came in this afternoon and told John he is doing extremely well taking into consideration the amount of chemo he has had. He told him he looks better than some of his patients.
John's stem cells will be reinfused tomorrow, and Wed. because he had so many cells harvested they need to put them all back in. His first infusion will start at noon tomorrow, another one at 4 pm, and then on Wed he will have his last one at 4pm. His recovery process will start from there....he may have all good days or a mix of a couple of bad and the remainder good. The doctor and nurses stated the same..."everyone is different", each body reacts differently to the medication and the reinfusion process. Since John has done so well so far, he may not have a bad ride. The doctor said to John "ride it out", he is doing great.
The scary part is gone for the most part, now we just need to wait it out after the reinfusion is done.
It will be a waiting process from here on out...there is a light at that end of this dark tunnel...I knew it! I am keep the faith, praying and holding strong...14 days and counting......
Thursday, November 5, 2009
Wed Afternoon
Day 3, Wed. Afternoon;
It is about 10 mins to 5 pm, John has just started to feel really tired and the nausea is setting in big time.
It kills me to see him this way. There is only medication that can help him now. I feel so helpless. I ask him if he wants water or something to eat, I know that is not going to help, but it just sounds and makes me feel better to at least try to help. The nurse just left to go get him some meds to see if that will help. Hopefully it will. He needs to try and get some sleep.
I hate to leave him this way. I wish I didn't have to go back to the hotel, I will stay until he feels better. Last shuttle leaves at 8:30 pm.
It is about 10 mins to 5 pm, John has just started to feel really tired and the nausea is setting in big time.
It kills me to see him this way. There is only medication that can help him now. I feel so helpless. I ask him if he wants water or something to eat, I know that is not going to help, but it just sounds and makes me feel better to at least try to help. The nurse just left to go get him some meds to see if that will help. Hopefully it will. He needs to try and get some sleep.
I hate to leave him this way. I wish I didn't have to go back to the hotel, I will stay until he feels better. Last shuttle leaves at 8:30 pm.
Updates
I haven't blogged in 2 months!! Shame on me. So much has been going on, I just haven't had the time or the energy to sit and blog.
John is going to have a stem cell transplant done. He went to Dana Farber for a consult and to schedule a date of admissions for the transplant. All this took place the end of Sept. He was told in Sept. he would have pretty much the month of Oct. to get his affairs in place, for he would be gone to Boston for the month of Nov. (well pretty much the month of Nov.
It all began on Oct. 26th, John would need to have his stem cells harvested to be reinfused. He was lucky enough to be able to have his own stem cells reinfused. Some people are not so lucky and have to find a donor. Which makes everything much worse for the patient and family. When you have your own cells reinfused, there is less risk of infection and rejection, since it is your own.
John starting his harvesting on the 26th he would need 2 million cells. Either he would get them all harvested in 1 day or 2, we of course were hoping for 2 days, however as our luck would run he would have to harvest for 2 days. Which is fine, it is just a pain in the butt. We had to get a room in Boston for 2 nights. It takes 7 hours a day to harvest. By the time John is done he is so tired, and who feels like dealing with anything.
He did it! 2nd day!!!! Harvesting done!! WHOOOH!!! We get to go home for 6 days to turn around and come back so he can have the transplant done. Which brings me to present day....
Day 3, John had his first round of chemo last night (he will be getting chemo 2x's a day for 4 days), today will be his 2nd full day of chemo, they will start his 1st dose at 11 am, he will get his 2nd dose at 11 pm.
He did extremely well last night, he didn't get sick at all! Whew! He looks really good today, a little tired, but that is to be expected. Two more days of chemo and counting.
John is very strong willed, this surely will not get him down!
I will try my very best to give updates daily as I know all of you are concerned about John and his condition.
Thank you all!
Love and Hugs,
Cathie & John
John is going to have a stem cell transplant done. He went to Dana Farber for a consult and to schedule a date of admissions for the transplant. All this took place the end of Sept. He was told in Sept. he would have pretty much the month of Oct. to get his affairs in place, for he would be gone to Boston for the month of Nov. (well pretty much the month of Nov.
It all began on Oct. 26th, John would need to have his stem cells harvested to be reinfused. He was lucky enough to be able to have his own stem cells reinfused. Some people are not so lucky and have to find a donor. Which makes everything much worse for the patient and family. When you have your own cells reinfused, there is less risk of infection and rejection, since it is your own.
John starting his harvesting on the 26th he would need 2 million cells. Either he would get them all harvested in 1 day or 2, we of course were hoping for 2 days, however as our luck would run he would have to harvest for 2 days. Which is fine, it is just a pain in the butt. We had to get a room in Boston for 2 nights. It takes 7 hours a day to harvest. By the time John is done he is so tired, and who feels like dealing with anything.
He did it! 2nd day!!!! Harvesting done!! WHOOOH!!! We get to go home for 6 days to turn around and come back so he can have the transplant done. Which brings me to present day....
Day 3, John had his first round of chemo last night (he will be getting chemo 2x's a day for 4 days), today will be his 2nd full day of chemo, they will start his 1st dose at 11 am, he will get his 2nd dose at 11 pm.
He did extremely well last night, he didn't get sick at all! Whew! He looks really good today, a little tired, but that is to be expected. Two more days of chemo and counting.
John is very strong willed, this surely will not get him down!
I will try my very best to give updates daily as I know all of you are concerned about John and his condition.
Thank you all!
Love and Hugs,
Cathie & John
Friday, September 25, 2009
Week of the 21st
I haven’t blogged since the 16th; it has been about a week.
Each time the phone rings, your heart sinks, is it the nurse, and what is the news going to be? John had his bone marrow test done last Thursday, he was suppose to have his results back this Monday, I knew he was worried, no call from the doctor’s office, it is 3:45 pm, they close at 5:00 pm. I ask if he wants me to call for him, answer is no, so scared and nervous, don’t know which way to turn. My theory is “no news is good news”. Tuesday morning, waiting for the phone to ring, jump at the sound of it, run to it with a ton of questions running in your head. John picks up the phone call, doctor states “your test results are CLEAN!!” “Everything is CLEAN” “There is no sign of cancer in your body at this time” Oh my God! Thank you. John was so excited he actually told the doctor “I love you man”. Really cute! WHEW! And a big WHEW! at that.
Dear God, you gotten us this far, please, just be there for the bone marrow transplant. Please.
Now the gammet of testing begins for John. His body must be in prestine condition before he has the bone marrow transplant done. Head to toe! He will be going for all sorts of testing at the hospital, series of blood work, a pulmanairy test, and a few other I fail to remember at this point, there are so many. He also has to go to the dentist to have his mouth completely clean. John cannot take the chance of infection. He actually went to the dentist on Tuesday, all day affair. He started off with a consult at the dentist, and he was told he needs to have two teeth pulled and two root canals. John is not a big fan of the dentist - at all! He has to get all these procedures done by the first week of November.
The nurse at this dentist office was great! Got John in at the oral surgeon for a consult the same day, he will be having his teeth pulled on Wednesday. And there was one other dentist he has to go to for the root canal, which will be October 5th. Then he should be done with the dentist.
Next step getting all the paperwork completed for Dana Farber. He actual received a binder, inch thick, with all sorts of information on the hospital and his procedure. Dear God.
I tell myself one day at a time. I am actually in awe of John’s courage, and strength. To be hit with this disease and have to fight all the punches, no matter what comes his way.
I admire everything about him. His spirit is so strong, it helps me to be strong and keep up my spirits. I have to, he is my love…now and always….his “babe”
Each time the phone rings, your heart sinks, is it the nurse, and what is the news going to be? John had his bone marrow test done last Thursday, he was suppose to have his results back this Monday, I knew he was worried, no call from the doctor’s office, it is 3:45 pm, they close at 5:00 pm. I ask if he wants me to call for him, answer is no, so scared and nervous, don’t know which way to turn. My theory is “no news is good news”. Tuesday morning, waiting for the phone to ring, jump at the sound of it, run to it with a ton of questions running in your head. John picks up the phone call, doctor states “your test results are CLEAN!!” “Everything is CLEAN” “There is no sign of cancer in your body at this time” Oh my God! Thank you. John was so excited he actually told the doctor “I love you man”. Really cute! WHEW! And a big WHEW! at that.
Dear God, you gotten us this far, please, just be there for the bone marrow transplant. Please.
Now the gammet of testing begins for John. His body must be in prestine condition before he has the bone marrow transplant done. Head to toe! He will be going for all sorts of testing at the hospital, series of blood work, a pulmanairy test, and a few other I fail to remember at this point, there are so many. He also has to go to the dentist to have his mouth completely clean. John cannot take the chance of infection. He actually went to the dentist on Tuesday, all day affair. He started off with a consult at the dentist, and he was told he needs to have two teeth pulled and two root canals. John is not a big fan of the dentist - at all! He has to get all these procedures done by the first week of November.
The nurse at this dentist office was great! Got John in at the oral surgeon for a consult the same day, he will be having his teeth pulled on Wednesday. And there was one other dentist he has to go to for the root canal, which will be October 5th. Then he should be done with the dentist.
Next step getting all the paperwork completed for Dana Farber. He actual received a binder, inch thick, with all sorts of information on the hospital and his procedure. Dear God.
I tell myself one day at a time. I am actually in awe of John’s courage, and strength. To be hit with this disease and have to fight all the punches, no matter what comes his way.
I admire everything about him. His spirit is so strong, it helps me to be strong and keep up my spirits. I have to, he is my love…now and always….his “babe”
Wednesday, September 16, 2009
The week of the 14th…
It has been a week since I blogged. I try to take the week and let it sink in before I sit and write down how I feel and what has been going on. Since John’s last chemo treatment each passing day he gets better and better, he is in remission and it shows. I still each day cannot believe this is happening to him, to us, to his family. My heart aches everyday, everyday I hold back the tears of anger and hurt. I pray to whatever God will listen to me, to hear my thoughts and help John and I bear the unbearable. I want him to be well again. I want to be able to go places and do things without having to constantly worry about;
Are there too many people around? Did I remember to bring the hand sanitizer? What little kid is running around in the restaurant or store that may have a cold?
John has been doing things around the house, probably things that he really shouldn’t be doing. He still has his pick-line in. The nurse had mention to him to be extremely careful; he needs to remember this line runs directly to his heart!
This past weekend (Saturday) was a perfect example. The back door to the house is totally shot. It needed to be replaced, and John had it in his head he was going to do this by himself. Ah, not such a good idea. I forget the exact sequence of events, if he had purchased the new door, or if he went to go get the new door on Sat. I think the new door was already there, John wanted to get out the old door and put in the new one.
It simply amazing me on how people can react towards John, full well knowing he is sick. I know to look at him, he doesn’t look sick, but he is. John needed help with this project, no doubt about it. He called his “friend” Gary, who actually has put in a door before so he would know how to do it. No go. Apparently per Gary it would take 3 days to put in a new door and Gary wasn’t going to miss his date that night…he just couldn’t. Good bye…useless creature. John decided to call his brother, very handyman, he would be able to help. John’s brother is great! I wish that I could do everything for John, and not always have to rely on family and friends. At any rate the old door was taken out; new door was put up in around 3 hrs! Not 3 days! Gary, you jerk! He did decide to stop by and see the progress of the door. That is another story for a new entry….too much anger on that one.
Sunday, I think this was the day we went for a cook-out at his sister’s house. Always a great time with his family, they are the nicest people. I have a secret, my two favorites…Jamie and Emily!!! Love those little girls…sorry….I can’t help it!
Monday, Tuesday, Wednesday….pretty normal to say the least, John’s nurse comes to change his dressing on his pick-line every Monday. Tuesday, just another Tuesday, Wednesday, today….the day before John’s bone marrow test, he did receive news from Dana Farber, that all of John’s tests up to date look great. It is pretty certain he will be using his own marrow for the transplant. Great news! The nurse from Dana told John he should be able to make a date to come to Boston the beginning of Nov. and be home for Thanksgiving! Now we really would be giving thanks! She will be sending out a packet to explain in further detail. We will still need to take a day before hand to go up and speak with Dr. Jacobsen. John needs to go to the hospital and speak with him and get the full explanation of the bone marrow transplant from start to finish.
Oh my heart, heavy at times when I am writing I just want to break down and cry….sad, angry, angry at this disease and what it does to people….sad….very sad…. I know there is a light at the end of this tunnel…..I am just waiting for it to shine on us
Are there too many people around? Did I remember to bring the hand sanitizer? What little kid is running around in the restaurant or store that may have a cold?
John has been doing things around the house, probably things that he really shouldn’t be doing. He still has his pick-line in. The nurse had mention to him to be extremely careful; he needs to remember this line runs directly to his heart!
This past weekend (Saturday) was a perfect example. The back door to the house is totally shot. It needed to be replaced, and John had it in his head he was going to do this by himself. Ah, not such a good idea. I forget the exact sequence of events, if he had purchased the new door, or if he went to go get the new door on Sat. I think the new door was already there, John wanted to get out the old door and put in the new one.
It simply amazing me on how people can react towards John, full well knowing he is sick. I know to look at him, he doesn’t look sick, but he is. John needed help with this project, no doubt about it. He called his “friend” Gary, who actually has put in a door before so he would know how to do it. No go. Apparently per Gary it would take 3 days to put in a new door and Gary wasn’t going to miss his date that night…he just couldn’t. Good bye…useless creature. John decided to call his brother, very handyman, he would be able to help. John’s brother is great! I wish that I could do everything for John, and not always have to rely on family and friends. At any rate the old door was taken out; new door was put up in around 3 hrs! Not 3 days! Gary, you jerk! He did decide to stop by and see the progress of the door. That is another story for a new entry….too much anger on that one.
Sunday, I think this was the day we went for a cook-out at his sister’s house. Always a great time with his family, they are the nicest people. I have a secret, my two favorites…Jamie and Emily!!! Love those little girls…sorry….I can’t help it!
Monday, Tuesday, Wednesday….pretty normal to say the least, John’s nurse comes to change his dressing on his pick-line every Monday. Tuesday, just another Tuesday, Wednesday, today….the day before John’s bone marrow test, he did receive news from Dana Farber, that all of John’s tests up to date look great. It is pretty certain he will be using his own marrow for the transplant. Great news! The nurse from Dana told John he should be able to make a date to come to Boston the beginning of Nov. and be home for Thanksgiving! Now we really would be giving thanks! She will be sending out a packet to explain in further detail. We will still need to take a day before hand to go up and speak with Dr. Jacobsen. John needs to go to the hospital and speak with him and get the full explanation of the bone marrow transplant from start to finish.
Oh my heart, heavy at times when I am writing I just want to break down and cry….sad, angry, angry at this disease and what it does to people….sad….very sad…. I know there is a light at the end of this tunnel…..I am just waiting for it to shine on us
Wednesday, September 9, 2009
Wednesday, the 9th, PET SCAN results
Called for John's PET Scan results this morning.....gulp! Nurse called the house around 10ish....handed the phone to John (he is in the bathroom)....I am trying to listen at the door....sounds like good news!! YES INDEED!! PET SCAN is CLEAN!!!!!!!! No sign of that nasty ass Cancer!!! OMG! SIGH OF RELIEF!!
WHEW!
Next step. Bone marrow test on the 17th with Dr. Castillo. I really hope that he has time to go over with John what his time frame is going to be from that point on. I understand he has to have his marrow tested and then wait another week for those results and then wait another 4-8 weeks before he can go for the bone marrow transplant. I want, I should say I hope Dr. Castillo will explain to him in full detail of what is going to happen. I would also love for Dr. Castillo to bring up the physician's name at Roger Williams hospital again that does the bone marrow transplants. I know that Dana Farber is the holy grail for people,everyone goes there, right. There should not be a question about it, right. Well I have a question about it. I am actually going to present this question to the Dr. Castillo and Dr. Jacobsen, who is the physican at Dana Farber. I want to know if Roger Williams is comparable to Dana Farber. I know Dana Farber is the best, why? Beacause people have been sent there for years, only because they are unaware there is a bone marrow transplant center in RI. I really need to find out more information on Roger Williams. I would love to get my hands to do the talking via email to Dr. Jacobsen at Dana Farber and ask him what he thinks of Roger Williams Hospital. What if he says to me or John for that matter, Roger Williams is an excellent hospital, yes, of course you can have your transplant done there. Would John go there? I am not trying to sound selfish and I hope it is not coming across that way. I want John to get the best treatment and care, no matter where he is. Anyone would do anything for a loved one in order to make them well again, the best doctor's, the best hospitals and the best care. I am there for him. There is not a doubt in my mind he will be fine...he will be back 110%....he has to....he just has to....
WHEW!
Next step. Bone marrow test on the 17th with Dr. Castillo. I really hope that he has time to go over with John what his time frame is going to be from that point on. I understand he has to have his marrow tested and then wait another week for those results and then wait another 4-8 weeks before he can go for the bone marrow transplant. I want, I should say I hope Dr. Castillo will explain to him in full detail of what is going to happen. I would also love for Dr. Castillo to bring up the physician's name at Roger Williams hospital again that does the bone marrow transplants. I know that Dana Farber is the holy grail for people,everyone goes there, right. There should not be a question about it, right. Well I have a question about it. I am actually going to present this question to the Dr. Castillo and Dr. Jacobsen, who is the physican at Dana Farber. I want to know if Roger Williams is comparable to Dana Farber. I know Dana Farber is the best, why? Beacause people have been sent there for years, only because they are unaware there is a bone marrow transplant center in RI. I really need to find out more information on Roger Williams. I would love to get my hands to do the talking via email to Dr. Jacobsen at Dana Farber and ask him what he thinks of Roger Williams Hospital. What if he says to me or John for that matter, Roger Williams is an excellent hospital, yes, of course you can have your transplant done there. Would John go there? I am not trying to sound selfish and I hope it is not coming across that way. I want John to get the best treatment and care, no matter where he is. Anyone would do anything for a loved one in order to make them well again, the best doctor's, the best hospitals and the best care. I am there for him. There is not a doubt in my mind he will be fine...he will be back 110%....he has to....he just has to....
PET Scan, Tuesday the 8th
John had his first PET Scan yesterday. It went well, nothing to it! Just another test where you have to drink that disqusting liquid, that they "try" to make taste good? I can never tell if he is nervous or not prior to testing. I know that he was starving! He was not able to have any thing to eat before the test. I felt so bad, I got up in the morning (early, before him), went to Dunkin, got a coffee and a muffin, ate it quickly before he got up. I didn't want to eat in front of him, felt too bad to do that. John got up and pretty much waited until the last possible minute to take a shower and go to have the test done, which was at RI Hospital. It didn't take a long to get there, but we left early, you never know with hospitals, if they are running on schedule or not. We got there a good half hour before John was scheduled to go in, the nurse said to John you are in luck today, the person before you cancelled, you should be able to go in earlier than expected. Oh happy day!
Sure enough, John was able to go in earler that expected. I was actually able to go into the room where they give him the dye injection, I sat with him while he got that and then they gave him that drink...yuck!
Unfortunately I was unable to sit with him while he had the test done. Too much radiation. I left him with a kiss good-bye and some luck. I went downstairs to the gift shop, got a book and magazine, came back upstairs to the waiting area. No sooner did I sit down and flip threw the magazine, John's nurse was at the door telling me John would be out in 60 seconds. What? That was quick. Well it seemed quick to me, I am sure it wasn't for John. There he came down the hallway, my heart sinks everytime I seem him come out from a test, or doctor's visit. I can't explain it. I feel so bad. It is just so unfair!
Poor John was starving, I suggested we go downstairs to the Au poin bon Cafe...one of my favorites. We had a nice sandwich there. I could see John couldn't wait to get home. He said on the way home his belly wasn't feeling all that great. Which was to be expected, after drinking that crap, yuck. He literally raced into the house to the bathroom, I will just leave it at that. He proceeded to get in a comfty position on the couch and try to take a nap. The phone is constantly ringing. All John wanted to do was take a nap. He did for a little bit, but he really needed a good nap. After his nap, we had dinner and watched some TV and went to bed. Long day....tommorrow we find out the results....fingers crossed.....
Sure enough, John was able to go in earler that expected. I was actually able to go into the room where they give him the dye injection, I sat with him while he got that and then they gave him that drink...yuck!
Unfortunately I was unable to sit with him while he had the test done. Too much radiation. I left him with a kiss good-bye and some luck. I went downstairs to the gift shop, got a book and magazine, came back upstairs to the waiting area. No sooner did I sit down and flip threw the magazine, John's nurse was at the door telling me John would be out in 60 seconds. What? That was quick. Well it seemed quick to me, I am sure it wasn't for John. There he came down the hallway, my heart sinks everytime I seem him come out from a test, or doctor's visit. I can't explain it. I feel so bad. It is just so unfair!
Poor John was starving, I suggested we go downstairs to the Au poin bon Cafe...one of my favorites. We had a nice sandwich there. I could see John couldn't wait to get home. He said on the way home his belly wasn't feeling all that great. Which was to be expected, after drinking that crap, yuck. He literally raced into the house to the bathroom, I will just leave it at that. He proceeded to get in a comfty position on the couch and try to take a nap. The phone is constantly ringing. All John wanted to do was take a nap. He did for a little bit, but he really needed a good nap. After his nap, we had dinner and watched some TV and went to bed. Long day....tommorrow we find out the results....fingers crossed.....
Friday, September 4, 2009
Labor Day Weekend
I can't believe it is already Labor Day Weekend! Crazy! Some days I think time is dragging by, I just want for John to be rid of this disease. Enough already. I feel so many different feelings hard to really pinpoint one. My mind is always running with so many different questions of what are future holds, it is scary. I am starting to forget things. I am trying to get so many things done quickly, I forget what I just did. Like this morning, I was driving to work thinking to myself "did I uplug the iron" (I didn't) UGH!! I had to call John and ask him to go downstairs an uplug it.
John has been off of his prednisone for 4 days now. The past 4 days have been a roller coaster to say the least. The withdrawals from this drug....I can't explain it. One day John is OK, attitude OK, everything is going fine, and then....switch....I don't know who is in the room. Satan? Not John, that's for sure. And then, the switch goes back to John. I find myself trying to watch what I say or what I do. At this point, whatever I do, it is NOT right. No matter what it is. It could be from not having his juice out in the morning, to forgetting a cheeseburger for dinner. Anything! Anything could set him off to turn into "Withdrawal Will" as I have nicknamed him. I am afraid to ask any questions, I never know what kind of reaction I am going to get. It is very difficult and stressful all at the same time. I feel bad, I know he is sick, so I just try to lay low. I even tell the dog, watch out mister, Daddy is in rare form, don't know how long it is going to last, so hold on tight.
Here is a better example. The computer. Let me start off by saying, I feel that Cox Communications is the worst carrier ever! SPEEDY INTERNET MY !@#$ Everyday, everyday, John sits down at the computer, it takes forever to get the Internet to come up.
John has decided to introduce himself to Facebook. It is a good way to get connect to family, old friends, etc. Fine. There is a game on Facebook called "Farm Town". I am on it, my sister, our friend Lisa and a few of my friends. The game is you work as a farmer on your farm. You plow, plant and harvest for money. You try to achieve as many levels as you can, this helps to buy more land, things for your farm, seeds, a barn, a house, even a mansion. All in all it is pretty funny. You can go to your friends farm and work on it for money, and experience points, it is just for fun. I find it therapeutic myself (lol)
The thing with Facebook/Farm Town, is there is so much to download that the computer takes twice as long and as you are working on your farm it will kick you out. Meaning, the computer will totally freeze up. Then you have to shut off the computer and log in again. This to John is like trying to climb Mt. Everest! OMG! I never heard so much swearing, banging on the computer. I told him to find something else to do. GO back to the word searches. OR, have someone come look at the computer to find out why it is doing that. I tried clearing up some disc space, getting rid of old files, etc. I don't know what the heck could be wrong with it.
I am fearing I will come home one day to find it on the front lawn!
Otherwise. John is doing good, he is trying to keep his spirits up, I know it's hard on him, it's hard on all of us....
John has been off of his prednisone for 4 days now. The past 4 days have been a roller coaster to say the least. The withdrawals from this drug....I can't explain it. One day John is OK, attitude OK, everything is going fine, and then....switch....I don't know who is in the room. Satan? Not John, that's for sure. And then, the switch goes back to John. I find myself trying to watch what I say or what I do. At this point, whatever I do, it is NOT right. No matter what it is. It could be from not having his juice out in the morning, to forgetting a cheeseburger for dinner. Anything! Anything could set him off to turn into "Withdrawal Will" as I have nicknamed him. I am afraid to ask any questions, I never know what kind of reaction I am going to get. It is very difficult and stressful all at the same time. I feel bad, I know he is sick, so I just try to lay low. I even tell the dog, watch out mister, Daddy is in rare form, don't know how long it is going to last, so hold on tight.
Here is a better example. The computer. Let me start off by saying, I feel that Cox Communications is the worst carrier ever! SPEEDY INTERNET MY !@#$ Everyday, everyday, John sits down at the computer, it takes forever to get the Internet to come up.
John has decided to introduce himself to Facebook. It is a good way to get connect to family, old friends, etc. Fine. There is a game on Facebook called "Farm Town". I am on it, my sister, our friend Lisa and a few of my friends. The game is you work as a farmer on your farm. You plow, plant and harvest for money. You try to achieve as many levels as you can, this helps to buy more land, things for your farm, seeds, a barn, a house, even a mansion. All in all it is pretty funny. You can go to your friends farm and work on it for money, and experience points, it is just for fun. I find it therapeutic myself (lol)
The thing with Facebook/Farm Town, is there is so much to download that the computer takes twice as long and as you are working on your farm it will kick you out. Meaning, the computer will totally freeze up. Then you have to shut off the computer and log in again. This to John is like trying to climb Mt. Everest! OMG! I never heard so much swearing, banging on the computer. I told him to find something else to do. GO back to the word searches. OR, have someone come look at the computer to find out why it is doing that. I tried clearing up some disc space, getting rid of old files, etc. I don't know what the heck could be wrong with it.
I am fearing I will come home one day to find it on the front lawn!
Otherwise. John is doing good, he is trying to keep his spirits up, I know it's hard on him, it's hard on all of us....
Wednesday, September 2, 2009
Haven't posted in weeks!!!
Thursday, August 27th, John's Last Day of Chemo!!! John and I met with his doctor (this was an unscheduled visit by the doctor). Dr. Castillo explained to John that this would be his last chemo treatment. All of the blood work, tests and scan John has done prior to today's date have all been good. He told John he spoke with several of his colleagues' (throughout the USA) about John's case. It is in John's best interest to have a bone marrow transplant done. The transplant would increase his survival rate. John will be using his own marrow.
In some cases, patients may be their own bone marrow donors. This is called an autologous BMT and is possible if the disease afflicting the bone marrow is in remission or if the condition being treated does not involve the bone marrow (e.g. breast cancer, ovarian cancer, Hodgkin's disease, non-Hodgkin's lymphoma, and brain tumors). The bone marrow is extracted from the patient prior to transplant and may be "purged" to remove lingering malignant cells (if the disease has afflicted the bone marrow) By John using his own marrow, he will have less complications. Dr. Castillo explained, when a donor is involved there is an increase of complications, infections, etc. The doctor suggested for John to have the transplant done at Roger Williams hospital, by Dr. Alhoma (sp?), he specializes in bone marrow transplants. Dr. Castillo added he will be in contact with Dana Farber to discuss John, however he recommended for John to go and see the doctor at Roger Williams. John's timeline is as follows: PET Scan in 2 wks, 1 wk after the PET Scan he will see Dr. Castillo, an appt will be made to do the bone marrow transplant test. John will have a 4-8 wks resting period before the bone marrow transplant is done. While John has the 2wks span before he gets the bone marrow test done, the doctor suggested he make an appt to go see the doctor at Roger Williams Hospital.
After John's treatment finished his nurse asked him if he wanted to "ring the bell". The Fain Center has this big gold bell, everytime someone finishes their chemo treament they RING THE BELL, it's like a bell of victory! It was so emotional, so happy, excited, unsure of what lies ahead, but for that moment when John rang that bell I thought please lord let this be the last time we ever have to see the inside of the Fain Center again (well for chemo treatments anyway).
So happy for my honey,he doesn't have to have those freakin' treatments anymore....let's keep it that way.....please!
In some cases, patients may be their own bone marrow donors. This is called an autologous BMT and is possible if the disease afflicting the bone marrow is in remission or if the condition being treated does not involve the bone marrow (e.g. breast cancer, ovarian cancer, Hodgkin's disease, non-Hodgkin's lymphoma, and brain tumors). The bone marrow is extracted from the patient prior to transplant and may be "purged" to remove lingering malignant cells (if the disease has afflicted the bone marrow) By John using his own marrow, he will have less complications. Dr. Castillo explained, when a donor is involved there is an increase of complications, infections, etc. The doctor suggested for John to have the transplant done at Roger Williams hospital, by Dr. Alhoma (sp?), he specializes in bone marrow transplants. Dr. Castillo added he will be in contact with Dana Farber to discuss John, however he recommended for John to go and see the doctor at Roger Williams. John's timeline is as follows: PET Scan in 2 wks, 1 wk after the PET Scan he will see Dr. Castillo, an appt will be made to do the bone marrow transplant test. John will have a 4-8 wks resting period before the bone marrow transplant is done. While John has the 2wks span before he gets the bone marrow test done, the doctor suggested he make an appt to go see the doctor at Roger Williams Hospital.
After John's treatment finished his nurse asked him if he wanted to "ring the bell". The Fain Center has this big gold bell, everytime someone finishes their chemo treament they RING THE BELL, it's like a bell of victory! It was so emotional, so happy, excited, unsure of what lies ahead, but for that moment when John rang that bell I thought please lord let this be the last time we ever have to see the inside of the Fain Center again (well for chemo treatments anyway).
So happy for my honey,he doesn't have to have those freakin' treatments anymore....let's keep it that way.....please!
Wednesday, August 19, 2009
Wednesday
Wednesday
John isn’t feeling good at all today. The lack of prednisone is really taking a toll on his body. I took his temp, no temp, took his pressure, pressure is good, whew! I was worried he may have an infection. You never know, which scares me to death. I would hate to see John have to try and fight and infection. He had breakfast and decided he was going to hang in today. He was supposed to have breakfast with an old friend, but he just didn’t feel well enough. He checked on his items for sale on Craig’s List and was happy to see people are responding and buying. He is trying to sell a canoe and our patio set right now, too funny, my Craig’s List Wheeler and Dealer. He actually is meeting with a guy today for the canoe, he said he seemed pretty interested, we shall see.
His friend Jeff stopped by. John is always welcome and happy to see him. He is a really good friend, calls John everyday, no matter how much he has on his plate, he is always there. Makes John happy to see him, you can just see it on his face, warms my heart to see him that way.
I hate leaving for work on afternoons that John is not feeling great. I get worried. Jeff was still there when I left, he was going to be there for another hour, and then the guy was coming to look at the canoe; I will try calling John now to see how he is doing. I need to know….it will drive me crazy sitting here so far away from him….
John isn’t feeling good at all today. The lack of prednisone is really taking a toll on his body. I took his temp, no temp, took his pressure, pressure is good, whew! I was worried he may have an infection. You never know, which scares me to death. I would hate to see John have to try and fight and infection. He had breakfast and decided he was going to hang in today. He was supposed to have breakfast with an old friend, but he just didn’t feel well enough. He checked on his items for sale on Craig’s List and was happy to see people are responding and buying. He is trying to sell a canoe and our patio set right now, too funny, my Craig’s List Wheeler and Dealer. He actually is meeting with a guy today for the canoe, he said he seemed pretty interested, we shall see.
His friend Jeff stopped by. John is always welcome and happy to see him. He is a really good friend, calls John everyday, no matter how much he has on his plate, he is always there. Makes John happy to see him, you can just see it on his face, warms my heart to see him that way.
I hate leaving for work on afternoons that John is not feeling great. I get worried. Jeff was still there when I left, he was going to be there for another hour, and then the guy was coming to look at the canoe; I will try calling John now to see how he is doing. I need to know….it will drive me crazy sitting here so far away from him….
Monday and Tuesday
Monday and Tuesday
Monday, was a pretty good day for John. This was his last day of the prednisone.
He decided he was going to go grocery shopping. I was a little worried since John is not really suppose to be in crowded places, but I figured it was so hot out that I am sure people wouldn’t be congregated in a market. He did the grocery shopping and the proceeded to make dinner when he got home. For the life of me I can’t remember what he made…I am sure it was good! John is becoming quite the chef!
Tuesday
First day off of the prednisone….John not feeling so good today, decided to stay in.
It was too hot out anyway. He pretty much slept for the day, lack of energy due to being off of the 120mg of prednisone. He did make dinner, pasta and beans and chicken on the bone! Yummy! It really was good, very impressed with John’s cooking skills.
Monday, was a pretty good day for John. This was his last day of the prednisone.
He decided he was going to go grocery shopping. I was a little worried since John is not really suppose to be in crowded places, but I figured it was so hot out that I am sure people wouldn’t be congregated in a market. He did the grocery shopping and the proceeded to make dinner when he got home. For the life of me I can’t remember what he made…I am sure it was good! John is becoming quite the chef!
Tuesday
First day off of the prednisone….John not feeling so good today, decided to stay in.
It was too hot out anyway. He pretty much slept for the day, lack of energy due to being off of the 120mg of prednisone. He did make dinner, pasta and beans and chicken on the bone! Yummy! It really was good, very impressed with John’s cooking skills.
Tuesday, August 18, 2009
Saturday and Sunday
Saturday Night
Our friend Dot came over Saturday night, I wasn’t sure John was going to be awake or not, he said he was tired, but ok to sit and chat with Dot. Dot is always good for a few laughs, and that we did. It makes me happy to see John happy. She brought him a tiny little blueberry pie and a cup of ice cream…literally a cup of ice cream (she is too funny).
John decided he was going to save it for later (which means tomorrow). Dot stayed until at least 11:30. We went to bed around 12.
Sunday Funday!
We always try to have a “Sunday Funday”, this Sunday was truly a Sunday Funday.
Our friend Luann has an annual beach party at Scarborough South Beach, we have gone every year, and John was determined to go. I think he may have been a little hesitant at first, but then figured he would go and if he didn’t feel good we could just go home.
I got our beach bag together, loaded up a few towels, (not that we would need them, but you never know), the cooler and can’t forget the sunscreen. I decided I was going to enjoy a few beers that day, I have done that in awhile, I feel bad drinking in front of John. We would always enjoy a few beers at the beach, not too much, just enough to enjoy.
Off to the liquor store we go. Before leaving for the liquor store John suggested I use the beer that was in the fridge, yes, I could have done that. However, I wanted to keep that in there incase someone dropped by and wanted a beer. Wrong move on my part! The switch was flicked and out came Prednisone Pete, oh boy, here we go. We get to the liquor store, I go in, get myself some beer, John 2 sodas and water, he brought 2 waters with him to start. I was in a panic, confused, I don’t know what I was, but I forgot to get ice in the liquor store. I said I am not going back in there; I will just go to 7/11 next door and get a bag (it is cheaper there anyway). Oh Dear God it was like I just pulled out the last piece of hair on John’s head. The swearing that came out of his mouth, I can’t even repeat, of how much !@#$ time it is going to take to get to the beach, never mind we have to drop off Oliver at my sisters house. Poor Oliver, always gets caught in the crossfire, he is clueless of what is going on. Thru John’s eyes that moment, Oliver was the biggest pain in the ass, why do you have to drop him off this is so @#$% stupid, etc, etc. You get the jest of the outburst. I just closed my eyes, took a deep breath and was silent the entire ride to my sister’s house. Dropped Oliver off to play with his cousin Sydney and then off to the beach party. Please keep in mind my sister lives right off of 1A, which brings you where??? Right to the beach, hence the trip to drop off the dog wasn’t out of the way.
We got to the beach at around 2ish, and of course the beach was beyond packed. They were not letting any cars in the main entrance. John and I drove around for a good 15 minutes before we went back to the main entrance so we could park on the grass.
Once we got into the beach parking lot and got to the party, things were fine. The switched flicked back to John and we had a great time. So good to see him among friends, laughing, talking, he even had a beer! I am not sure if it was an entire beer, but 1 beer. With a water to chase it, had to do that, John can’t afford to get dehydrated. We really had a good time; it was nice to get out and about together. A few people approached John, and there of course was the silent moment of not knowing what to say, but eventually the conversation starts and everything is ok. Everyone truly likes John, some people I would even say love him…I know I do….
Our friend Dot came over Saturday night, I wasn’t sure John was going to be awake or not, he said he was tired, but ok to sit and chat with Dot. Dot is always good for a few laughs, and that we did. It makes me happy to see John happy. She brought him a tiny little blueberry pie and a cup of ice cream…literally a cup of ice cream (she is too funny).
John decided he was going to save it for later (which means tomorrow). Dot stayed until at least 11:30. We went to bed around 12.
Sunday Funday!
We always try to have a “Sunday Funday”, this Sunday was truly a Sunday Funday.
Our friend Luann has an annual beach party at Scarborough South Beach, we have gone every year, and John was determined to go. I think he may have been a little hesitant at first, but then figured he would go and if he didn’t feel good we could just go home.
I got our beach bag together, loaded up a few towels, (not that we would need them, but you never know), the cooler and can’t forget the sunscreen. I decided I was going to enjoy a few beers that day, I have done that in awhile, I feel bad drinking in front of John. We would always enjoy a few beers at the beach, not too much, just enough to enjoy.
Off to the liquor store we go. Before leaving for the liquor store John suggested I use the beer that was in the fridge, yes, I could have done that. However, I wanted to keep that in there incase someone dropped by and wanted a beer. Wrong move on my part! The switch was flicked and out came Prednisone Pete, oh boy, here we go. We get to the liquor store, I go in, get myself some beer, John 2 sodas and water, he brought 2 waters with him to start. I was in a panic, confused, I don’t know what I was, but I forgot to get ice in the liquor store. I said I am not going back in there; I will just go to 7/11 next door and get a bag (it is cheaper there anyway). Oh Dear God it was like I just pulled out the last piece of hair on John’s head. The swearing that came out of his mouth, I can’t even repeat, of how much !@#$ time it is going to take to get to the beach, never mind we have to drop off Oliver at my sisters house. Poor Oliver, always gets caught in the crossfire, he is clueless of what is going on. Thru John’s eyes that moment, Oliver was the biggest pain in the ass, why do you have to drop him off this is so @#$% stupid, etc, etc. You get the jest of the outburst. I just closed my eyes, took a deep breath and was silent the entire ride to my sister’s house. Dropped Oliver off to play with his cousin Sydney and then off to the beach party. Please keep in mind my sister lives right off of 1A, which brings you where??? Right to the beach, hence the trip to drop off the dog wasn’t out of the way.
We got to the beach at around 2ish, and of course the beach was beyond packed. They were not letting any cars in the main entrance. John and I drove around for a good 15 minutes before we went back to the main entrance so we could park on the grass.
Once we got into the beach parking lot and got to the party, things were fine. The switched flicked back to John and we had a great time. So good to see him among friends, laughing, talking, he even had a beer! I am not sure if it was an entire beer, but 1 beer. With a water to chase it, had to do that, John can’t afford to get dehydrated. We really had a good time; it was nice to get out and about together. A few people approached John, and there of course was the silent moment of not knowing what to say, but eventually the conversation starts and everything is ok. Everyone truly likes John, some people I would even say love him…I know I do….
Monday, August 17, 2009
Weekend of August 14th
Great weekend! It looks like John is in "clinical remission" and boy does it show. He got up on Saturday morning ready to go! He didn't know where or what he was going to do, but he was going to do something. John felt he wasn't feeling well enough to drive, so he would need to find someone who would be around and wanted to do something. Shock, he ended up with my sister (they have totally bonded! LOL!Friday are usually "their" days, this weekend it happen to be Saturday) My sister came by and picked up John, well, she drove his truck to his brother-in-laws landscaping business, John had cut some wood last year and stored it in one of the vacant lots where the landscaping business is. He decided to go and pick up some wood for her and shrink wrap some wood for himself to sell on Craig's list (oh Craig's list...that is an entirely different blog). They picked a load of wood, drove it back to my sister's house, dropped it off, and then stack it in her backyard behind her shed.
I almost lost it when I heard this, John is not suppose to be in the sun for one or getting hurt! John swore to me all he did was supervise, which my sister did confirm, whew!
He really had a full day, and loved every minute of it. It made him so happy to be out and doing something, and something he likes to do. This makes me happy to see him this way, you can see it in his face and in his body language, just to be out and about with people, doing normal things.
I prayer to whatever God will listen to me, please let John be disease free....that is my wish for him...
I almost lost it when I heard this, John is not suppose to be in the sun for one or getting hurt! John swore to me all he did was supervise, which my sister did confirm, whew!
He really had a full day, and loved every minute of it. It made him so happy to be out and doing something, and something he likes to do. This makes me happy to see him this way, you can see it in his face and in his body language, just to be out and about with people, doing normal things.
I prayer to whatever God will listen to me, please let John be disease free....that is my wish for him...
Saturday, August 15, 2009
Thursday, Aug. 13th Chemo and Doctor Visit
Today is John's 5th treatment of chemo. I can't even believe he is already on his 5th treatment, never mind that he has to have chemo treatment at all. Unbelievable. Still til this day I think to myself, why? what? is this for real. Everything for John and I was flipped upside down. I think and tell John if there is something you want or want to do, go and get it and go and do it!
John started his treatment as normal, the doctor came in to discuss with John his CT scan results and what in store for him. John and I had a list of questions for the doctor;
1) Cuts and scrapes on leg ok? Doctor stated they are fine. They look like they healing properly, no infection.
2) Lovenox (shot in the stomach) John wanted to know if there was a substitute for the shot. There are pills that John could take, however, they would have to test John's blood 2-3 times the first week he was on them in order to regulate the dosage he would need to take. Once this is regulated John would still need to have his blood done every week while he was on the pills. John decided to stay with the shots once a day for the next 3 months.
3) CT Scan
A) Quest on cyst. Dr. stated this is nothing to be concerned about, extremely small, normal at that.
B) Quest on lymph nodes. Not one lymph node is enlarged? Correct NO LYMPH NODES ARE ENLARGED (Sweet!)
C) Clot? There is a very small clot, it is not obstructing anything, to be on the safe side, John ordered to have the Lovenox shot done each day for the next 3 months.
D) Why did the clot occur? Dr stated it is undetermined.
4) Fingertip numbness? Dr stated it is ok, however if the numbness travels to the center of the hand to contact him.
5) Remission? Dr. stated John is radio graphically in remission. Which means the imaging does not show any disease present in John's body. Again the Dr. stated this is from a clinical standpoint, not pathological)
6) Information from CT Scan be sent to Dana Farber? The Dr. stated yes. Once all scan are completed and read he will be contacting Dana Farber. He noted to John and I he is in constant contact with renown Cancer Centers throughout the United States of America (to name a few Seattle, California and Mass)
7) Prednisone? All the side effects John described he was having are ok.
Once final treatment is done, John will have to wait 2 wks and then go for a PET Scan, if this is clear John will have the bone marrow test done. These tests will determine if there is a need for the actual bone marrow transplant. Very scary decision for John to make.I am extremely nervous about this bone marrow transplant. I have been doing research on this treatment. There is so much involved, John will be brought to the brink of death by all the chemo they will have to pump in his system in order to prepare his body for the transplant. Once the transplant is done he MUST stay in the hospital for at least,(they say online) 2 months. Once he comes home, which they suggest he stays near the hospital in which he received the transplant, he must visit the dr 2 to 3 times a week. He will not fully recover from the transplant for 1 full year. No ifs ands or buts about it. John's immune system will be almost nothing. He pretty much will be confined to the house. I am so confused and worried for him....
John started his treatment as normal, the doctor came in to discuss with John his CT scan results and what in store for him. John and I had a list of questions for the doctor;
1) Cuts and scrapes on leg ok? Doctor stated they are fine. They look like they healing properly, no infection.
2) Lovenox (shot in the stomach) John wanted to know if there was a substitute for the shot. There are pills that John could take, however, they would have to test John's blood 2-3 times the first week he was on them in order to regulate the dosage he would need to take. Once this is regulated John would still need to have his blood done every week while he was on the pills. John decided to stay with the shots once a day for the next 3 months.
3) CT Scan
A) Quest on cyst. Dr. stated this is nothing to be concerned about, extremely small, normal at that.
B) Quest on lymph nodes. Not one lymph node is enlarged? Correct NO LYMPH NODES ARE ENLARGED (Sweet!)
C) Clot? There is a very small clot, it is not obstructing anything, to be on the safe side, John ordered to have the Lovenox shot done each day for the next 3 months.
D) Why did the clot occur? Dr stated it is undetermined.
4) Fingertip numbness? Dr stated it is ok, however if the numbness travels to the center of the hand to contact him.
5) Remission? Dr. stated John is radio graphically in remission. Which means the imaging does not show any disease present in John's body. Again the Dr. stated this is from a clinical standpoint, not pathological)
6) Information from CT Scan be sent to Dana Farber? The Dr. stated yes. Once all scan are completed and read he will be contacting Dana Farber. He noted to John and I he is in constant contact with renown Cancer Centers throughout the United States of America (to name a few Seattle, California and Mass)
7) Prednisone? All the side effects John described he was having are ok.
Once final treatment is done, John will have to wait 2 wks and then go for a PET Scan, if this is clear John will have the bone marrow test done. These tests will determine if there is a need for the actual bone marrow transplant. Very scary decision for John to make.I am extremely nervous about this bone marrow transplant. I have been doing research on this treatment. There is so much involved, John will be brought to the brink of death by all the chemo they will have to pump in his system in order to prepare his body for the transplant. Once the transplant is done he MUST stay in the hospital for at least,(they say online) 2 months. Once he comes home, which they suggest he stays near the hospital in which he received the transplant, he must visit the dr 2 to 3 times a week. He will not fully recover from the transplant for 1 full year. No ifs ands or buts about it. John's immune system will be almost nothing. He pretty much will be confined to the house. I am so confused and worried for him....
Wednesday, August 12, 2009
Yesterday...
Yesterday was like John wasn't sick at all. I absolutely love these days. He went to lunch with his friend Jeff and after lunch they decided to go fishing. Wow! John must have been in his glory.
He was out, with his friend, fishing, just like the good old days. John gets home around 3ish to greet me with a knee full of scrapes! Yikes! John! Not good. John is on a blood-thinner now, in addition to his regular meds. The main thing is John is suppose to be extremely cautious not to get any infection of any kind. I am in a little bit of a panic now, scared his cuts may get infected.
I cleaned it as much as he would allow me to (of course it hurt), I put some antibacterial ointment on it and crossed my fingers.
I know John wants to act and be as normal as possible, but he needs to keep in mind, he cannot get any type of infection. This could be bad.
I hate the days before treatment, because he really does act normal, like he is not sick at all. Can do things just like he did before he got sick. Then treatment day comes and knocks him down a few pegs, not too bad, but bad enough where he gets tired quicker, doesn't feel like he can do much. By the time day 4 after treatment comes, he is exhausted by everything he does.
Day 5, he knows, no more prednisone, not good....here comes "Withdrawal Will" (as you can see I am not a big fan of "Will", he is mean! I keep on having to tell myself, "John is still in there somewhere, he should be back in a couple of days"
This sickness has changed our lives in so many ways, it makes you look at things in a totally different light. You come to find out who your true friends are. Who will stick by you no matter what. Family, can't say enough...lucky to have such a great one!
He was out, with his friend, fishing, just like the good old days. John gets home around 3ish to greet me with a knee full of scrapes! Yikes! John! Not good. John is on a blood-thinner now, in addition to his regular meds. The main thing is John is suppose to be extremely cautious not to get any infection of any kind. I am in a little bit of a panic now, scared his cuts may get infected.
I cleaned it as much as he would allow me to (of course it hurt), I put some antibacterial ointment on it and crossed my fingers.
I know John wants to act and be as normal as possible, but he needs to keep in mind, he cannot get any type of infection. This could be bad.
I hate the days before treatment, because he really does act normal, like he is not sick at all. Can do things just like he did before he got sick. Then treatment day comes and knocks him down a few pegs, not too bad, but bad enough where he gets tired quicker, doesn't feel like he can do much. By the time day 4 after treatment comes, he is exhausted by everything he does.
Day 5, he knows, no more prednisone, not good....here comes "Withdrawal Will" (as you can see I am not a big fan of "Will", he is mean! I keep on having to tell myself, "John is still in there somewhere, he should be back in a couple of days"
This sickness has changed our lives in so many ways, it makes you look at things in a totally different light. You come to find out who your true friends are. Who will stick by you no matter what. Family, can't say enough...lucky to have such a great one!
Monday, August 10, 2009
The weekend...August 8th and 9th
I can't believe how John is doing, it really makes me happy to see him up and out and about.
This weekend was yet another great weekend!
Friday, John went to his sister's for the day, and ended up staying for dinner that night. I had to work, I didn't end up going. I wanted John to have some family time. I think he needed it.
He didn't come home until 10:00 pm! He had such a good time! So nice to see that smile! Fills my heart with joy for him.
Saturday, John and his brother went to my sister's house to help her put together her TV stand and hook up her brand new TV! Sweet! John was there for the entire day. Kevin drove back to his house to drop himself off and then John drove home! Yes! John is driving! He feels just that good! (we are not getting crazy, he drives short distances only)
We had another "Sunday Funday" with my sister, me, my sister and John went sofa shopping.
John did not need to use the wheelchair or anything, he walked each store we went to. Unbelievable! He did end up buying a leather sofa for the living room, really nice leather, really sharp looking, it is going to look really nice in the living room. Now we need to sell the sofa that we are using now, (by Sunday!) the new sofa is being delivered on Sunday.
John has been on Craig's List all day today, keeps him busy, and we need to get some stuff on the site to sell. We have so many things that we just don't use or we just don't have room for anymore.
John has been having his moments, I think he gets scared, and snaps at me or the dog sometimes. He does catch himself and his mood goes from snappy to happy.
It is so stressful, and tiring all at the same time trying to keep everything organized, keep the laundry going and done, keep the house clean, keep John's pills and appoints on schedule.
I will have to say, I am pleasantly surprised when dinner is ready when I get home. I am glad he has decided to take an interest in cooking. Let's just hope he stays with it.
Ha! I just got off the phone with him, asked him what he had planned for dinner, he said he wasn't really all that interested in cooking tonight...ahhhhh.....soooo soon....he is already starting to lose interest!?! I hope not...
This weekend was yet another great weekend!
Friday, John went to his sister's for the day, and ended up staying for dinner that night. I had to work, I didn't end up going. I wanted John to have some family time. I think he needed it.
He didn't come home until 10:00 pm! He had such a good time! So nice to see that smile! Fills my heart with joy for him.
Saturday, John and his brother went to my sister's house to help her put together her TV stand and hook up her brand new TV! Sweet! John was there for the entire day. Kevin drove back to his house to drop himself off and then John drove home! Yes! John is driving! He feels just that good! (we are not getting crazy, he drives short distances only)
We had another "Sunday Funday" with my sister, me, my sister and John went sofa shopping.
John did not need to use the wheelchair or anything, he walked each store we went to. Unbelievable! He did end up buying a leather sofa for the living room, really nice leather, really sharp looking, it is going to look really nice in the living room. Now we need to sell the sofa that we are using now, (by Sunday!) the new sofa is being delivered on Sunday.
John has been on Craig's List all day today, keeps him busy, and we need to get some stuff on the site to sell. We have so many things that we just don't use or we just don't have room for anymore.
John has been having his moments, I think he gets scared, and snaps at me or the dog sometimes. He does catch himself and his mood goes from snappy to happy.
It is so stressful, and tiring all at the same time trying to keep everything organized, keep the laundry going and done, keep the house clean, keep John's pills and appoints on schedule.
I will have to say, I am pleasantly surprised when dinner is ready when I get home. I am glad he has decided to take an interest in cooking. Let's just hope he stays with it.
Ha! I just got off the phone with him, asked him what he had planned for dinner, he said he wasn't really all that interested in cooking tonight...ahhhhh.....soooo soon....he is already starting to lose interest!?! I hope not...
Friday, August 7, 2009
TEST RESULTS
I have to sit and wonder to myself, what people are truly thinking.
John calls his doctor this morning (9:30 ish) to discuss his test results and to discuss what happen the night before in regards to leaving a message like that on some one's answering machine, and why wasn't a phone call made to his cell phone.
John gets in touch with his nurse, he explains what he encountered, and of course he gets the "I'm sorry". Sorry doesn't cut it sister. This is someones life you are dealing with. This is not a !@$ game! She tells John to tell me not to give him the shot, she wants to be sure that is what he is suppose to be getting. Again, are you !@#$% kidding me?! He was told via ANS MACHINE that was the drug that was to be administer and again at the hospital last night. COME ON!
John asks to speak with his doctor and of course, he is not available. She will leave a message for him to call him back. She will have to call him back too, she needs to confirm the medication.
It is 12:15 pm, I am leaving for work and suggest to John to call the Fain Center again, he can't wait on this shot. I go to work and get a phone call at 2:30 pm from John, he spoke to a different nurse who told John the doctor apologizes, he can't come to the phone, but your CT Scan is great and he is going in the right direction. WHAT?! The nurse asked John if he took his shot, he told her, no. Jenn (John's nurse) told him not to, she needed to confirm that was the right medication. The nurse on the phone comps and attitude with John and tells him he needs to take his shot before it gets to late in the day. He needs to take 2 shots, 12 hours apart. John is furious. Can't say that I blame him. YOU HAVE CANCER, YOUR DOCTOR HAS YOUR CT SCAN RESULTS THAT ARE SUPER IMPORTANT, AND YOU DON'T HAVE TIME TO COME TO THE PHONE?! Not good. John has 2 more chemo treatments left. John needs 2 treatments and then another scan. John really needs to get a new doc and have his results sent to Dr. Jacobsen at Dana Farber.
I just got off the phone with John, he is on his way to Gina's house to search for a new doctor.
This is getting out of hand...John shouldn't have to deal with this. Isn't it bad enough he has this horrible disease!? ...I hate this...
John calls his doctor this morning (9:30 ish) to discuss his test results and to discuss what happen the night before in regards to leaving a message like that on some one's answering machine, and why wasn't a phone call made to his cell phone.
John gets in touch with his nurse, he explains what he encountered, and of course he gets the "I'm sorry". Sorry doesn't cut it sister. This is someones life you are dealing with. This is not a !@$ game! She tells John to tell me not to give him the shot, she wants to be sure that is what he is suppose to be getting. Again, are you !@#$% kidding me?! He was told via ANS MACHINE that was the drug that was to be administer and again at the hospital last night. COME ON!
John asks to speak with his doctor and of course, he is not available. She will leave a message for him to call him back. She will have to call him back too, she needs to confirm the medication.
It is 12:15 pm, I am leaving for work and suggest to John to call the Fain Center again, he can't wait on this shot. I go to work and get a phone call at 2:30 pm from John, he spoke to a different nurse who told John the doctor apologizes, he can't come to the phone, but your CT Scan is great and he is going in the right direction. WHAT?! The nurse asked John if he took his shot, he told her, no. Jenn (John's nurse) told him not to, she needed to confirm that was the right medication. The nurse on the phone comps and attitude with John and tells him he needs to take his shot before it gets to late in the day. He needs to take 2 shots, 12 hours apart. John is furious. Can't say that I blame him. YOU HAVE CANCER, YOUR DOCTOR HAS YOUR CT SCAN RESULTS THAT ARE SUPER IMPORTANT, AND YOU DON'T HAVE TIME TO COME TO THE PHONE?! Not good. John has 2 more chemo treatments left. John needs 2 treatments and then another scan. John really needs to get a new doc and have his results sent to Dr. Jacobsen at Dana Farber.
I just got off the phone with John, he is on his way to Gina's house to search for a new doctor.
This is getting out of hand...John shouldn't have to deal with this. Isn't it bad enough he has this horrible disease!? ...I hate this...
CT Scan
John went for his CT Scan yesterday, this was a very important day. This scan is going to tell us if the cancer has spread to any other part of his body. He went to have the test done at 12:30 pm, after the test was done John went to the Fain Ctr for blood work and to speak with his doctor about the test results (or so we thought). We arrive at the Fain Center at 2:20 pm, his sister Gina met us there, (6 sets of eyes and ears are better than 4). John checks in with his nurse and proceeds to get his blood work done,Gina and I wait in the waiting room, about 15 minutes goes by and John is coming down the hall with a disappointing face, my heart sinks. John tells Gina and me that he did not get his results, it was just blood work today, a miscommunication in the dates and times. Odd. I could have sworn it was said, by whom I am not sure, that John would have his test results the same day of the testing. John's nurse told him he would not have the results for another 2 days. Not good. The waiting is the worst, especially with something of this nature. John, Gina and I leave the hospital and tell ourselves tomorrow is another day, we will call the doctor then to try and get the results.
John and I decided it is still early in the afternoon, we can run some errands and go pick Oliver at my sister's. We run all of our errands, grab something to eat and go to my sister's to pick up Oliver. We come home and there is a message on the ans machine "John, this is Sharon from the Fain Center, the CT Scan showed a blot clot in one of your veins, you need to come back to the Fain Center so we can administer Lovenox. WHAT?!?
First of all why in the world would you leave a message like that on an ans machine?!
Second WHY DIDN'T THE NURSE CALL JOHN'S CELL PHONE!?! If it is a BLOOD CLOT - THAT IS PRETTY SERIOUS!!NEEDS IMMEDIATE ATTENTION!!
John and I don't know what do to, we are in a panic. I call the Emergency Call Center (yeah right!), never get a nurse or a doctor the first phone call. Always have to wait. Yeah, NOT THIS TIME. I called once, no response in a 1/2 hr, called again until I got someone on the phone. Of course, the nurse tells John, get to the hospital ASAP! Off the the hospital we go, 9:00PM. Get to the ER, the nurse already knows John CANNOT wait in the ER - NEVER MIND SWINE FLU PEOPLE!! HELLO John's IMMUNE SYSTEM IS AT AN ALL TIME LOW!!! The registering nurse was a bitch, thank god for the nurse that was sitting there and had already spoke to John. We get into a room, wait 5 HOURS!!! Before a doctor comes in. John explains the events that occurred that day, and asked the doctor to get the CT results, which she did. They are clean? Who can read that test, besides a doctor? The doctor explained John would have to speak to his doctor about the results. He does have a minor clot in his groin area. He would have to get a shot in his belly 2X's a day for the next 5 days. Seriously!? What in the world is going on?!? It seems like the left doesn't know what the right is doing. It really looks very unprofessional. We are disgusted at this point. To add to this debacle, I notice at the bottom of the typed report, the nurses name...Sharon, Fain Center, time: 2:20 PM. ARE YOU !@#$% KIDDING ME?! WE WERE AT THE FAIN CENTER AT 2:20 PM! Come on, this isn't right. We are furious to say the least. Didn't go to bed until 1:30 a.m.
John and I decided it is still early in the afternoon, we can run some errands and go pick Oliver at my sister's. We run all of our errands, grab something to eat and go to my sister's to pick up Oliver. We come home and there is a message on the ans machine "John, this is Sharon from the Fain Center, the CT Scan showed a blot clot in one of your veins, you need to come back to the Fain Center so we can administer Lovenox. WHAT?!?
First of all why in the world would you leave a message like that on an ans machine?!
Second WHY DIDN'T THE NURSE CALL JOHN'S CELL PHONE!?! If it is a BLOOD CLOT - THAT IS PRETTY SERIOUS!!NEEDS IMMEDIATE ATTENTION!!
John and I don't know what do to, we are in a panic. I call the Emergency Call Center (yeah right!), never get a nurse or a doctor the first phone call. Always have to wait. Yeah, NOT THIS TIME. I called once, no response in a 1/2 hr, called again until I got someone on the phone. Of course, the nurse tells John, get to the hospital ASAP! Off the the hospital we go, 9:00PM. Get to the ER, the nurse already knows John CANNOT wait in the ER - NEVER MIND SWINE FLU PEOPLE!! HELLO John's IMMUNE SYSTEM IS AT AN ALL TIME LOW!!! The registering nurse was a bitch, thank god for the nurse that was sitting there and had already spoke to John. We get into a room, wait 5 HOURS!!! Before a doctor comes in. John explains the events that occurred that day, and asked the doctor to get the CT results, which she did. They are clean? Who can read that test, besides a doctor? The doctor explained John would have to speak to his doctor about the results. He does have a minor clot in his groin area. He would have to get a shot in his belly 2X's a day for the next 5 days. Seriously!? What in the world is going on?!? It seems like the left doesn't know what the right is doing. It really looks very unprofessional. We are disgusted at this point. To add to this debacle, I notice at the bottom of the typed report, the nurses name...Sharon, Fain Center, time: 2:20 PM. ARE YOU !@#$% KIDDING ME?! WE WERE AT THE FAIN CENTER AT 2:20 PM! Come on, this isn't right. We are furious to say the least. Didn't go to bed until 1:30 a.m.
Wednesday, August 5, 2009
Prednisone, friend or foe?
John has been off of his Prednisone for two days now. He went from 120 mg to 0.
Day one (Monday) was ok, not too bad, mood swings were definitely there, but not as bad as day two (Tuesday).
Day two, started off pretty good, and then went downhill. It is really hard to tell and to say when the "horns" are going to start to come out of John's head.
I had to work all day yesterday, I spoke with him a few times, the few times I did speak with him he sounded fine. He drove yesterday! YEAH! He went to lunch with his Mom and then went to her house for a little bit, picked up some recipe books from her so he can start to really cook.
That is his new hobby...cooking. He seems to really be interested in it.
When I came home from work last night he was making steak, mashed potatoes and a wine/mushroom sauce, it looked delicious. And then..."Withdrawal Will" came out...it was just a matter of time.
John went out back to start the gas grill, and of course, there was only a little bit of gas left. Now the "Storm of Withdrawal Will" has set in. The yelling of "WHY ISN'T THERE ANY GAS IN THE GRILL!" "WHY DIDN'T YOU TELL ME?"
(like that is what I do on a daily basis is check on the gas in the gas grill)
I took a deep breath, walked back in the house and closed the door.
He proceeds to follow me in the house and finish the steaks on the stove, which was fine, they tasted just as good, the sauce was fine, the potatoes were fine, everything was fine....not to John. He just thought dinner was ruined because he had to finish the steaks on the stove, let's not even get started on the wine/mushroom sauce...the emotion switch flicks back up....and John is back "Withdrawal Will" is gone, but just for a moment...don't blink Cathie, he could come back....it's only a matter of time.....
And that was dinner on Tuesday.
Symptoms of Withdrawal From Prednisone
Prednisone withdrawal symptoms can include but are not limited to:
A general ill feeling
Muscle weakness
Nausea and vomiting
A fever
Low blood pressure (hypotension)
Dehydration
Mental changes
Muscle pain or joint pain
Flaky or peeling skin
Difficulty breathing
Loss of appetite.
Day one (Monday) was ok, not too bad, mood swings were definitely there, but not as bad as day two (Tuesday).
Day two, started off pretty good, and then went downhill. It is really hard to tell and to say when the "horns" are going to start to come out of John's head.
I had to work all day yesterday, I spoke with him a few times, the few times I did speak with him he sounded fine. He drove yesterday! YEAH! He went to lunch with his Mom and then went to her house for a little bit, picked up some recipe books from her so he can start to really cook.
That is his new hobby...cooking. He seems to really be interested in it.
When I came home from work last night he was making steak, mashed potatoes and a wine/mushroom sauce, it looked delicious. And then..."Withdrawal Will" came out...it was just a matter of time.
John went out back to start the gas grill, and of course, there was only a little bit of gas left. Now the "Storm of Withdrawal Will" has set in. The yelling of "WHY ISN'T THERE ANY GAS IN THE GRILL!" "WHY DIDN'T YOU TELL ME?"
(like that is what I do on a daily basis is check on the gas in the gas grill)
I took a deep breath, walked back in the house and closed the door.
He proceeds to follow me in the house and finish the steaks on the stove, which was fine, they tasted just as good, the sauce was fine, the potatoes were fine, everything was fine....not to John. He just thought dinner was ruined because he had to finish the steaks on the stove, let's not even get started on the wine/mushroom sauce...the emotion switch flicks back up....and John is back "Withdrawal Will" is gone, but just for a moment...don't blink Cathie, he could come back....it's only a matter of time.....
And that was dinner on Tuesday.
Symptoms of Withdrawal From Prednisone
Prednisone withdrawal symptoms can include but are not limited to:
A general ill feeling
Muscle weakness
Nausea and vomiting
A fever
Low blood pressure (hypotension)
Dehydration
Mental changes
Muscle pain or joint pain
Flaky or peeling skin
Difficulty breathing
Loss of appetite.
Tuesday, August 4, 2009
John is going to drive today!
I just got off the phone with John (for the 3rd time this morning), he is going to drive!
I am so happy for him. He has been going crazy just sitting around the house.
He checked his blood pressure and heart rate this morning, they were both good. He said his energy level today is at an all time high. I told him that is great - however, don't get crazy.
He said all he is going to do is go to his Mom's (she only lives like 3 blocks from our house), and then go to Border's Books, in Garden City. Again, not that far from our house, and he will be with his Mom. Whew!
I can hear the excitement in his voice, he can't wait to get out and drive his truck. I know he misses driving so much. I am so happy for him!
I am so happy for him. He has been going crazy just sitting around the house.
He checked his blood pressure and heart rate this morning, they were both good. He said his energy level today is at an all time high. I told him that is great - however, don't get crazy.
He said all he is going to do is go to his Mom's (she only lives like 3 blocks from our house), and then go to Border's Books, in Garden City. Again, not that far from our house, and he will be with his Mom. Whew!
I can hear the excitement in his voice, he can't wait to get out and drive his truck. I know he misses driving so much. I am so happy for him!
Monday, August 3, 2009
The weekend after chemo treatment...
John is getting better with each chemo treatment. This past weekend was yet another great weekend! :0) Friday I worked until 7pm and got home to a surprise dinner! John made chicken pittaca, it was so good, I was so happy to see him happy and to be able to do something. I know he must feel guilty at timeshe wants to do something, anything, even fix something stupid in the house, but he can't because his energy level is so low. Any hew, dinner was great!
HE EVEN CLEANED UP!!! We watched a movie together, did our usual flushing of his pic lines, and went to bed. Great night!
Saturday morning John decided he was going to go to his friend Gary's house. Gary was working in his yard, John said he was just going to watch. I was a little hesitant in him going, I know John he can't sit still, he will want to help Gary with whatever he is doing. I dropped him off at Gary's around 11ish, I went home and cleaned the house. This worked out great I can actually "clean-clean". It is hard when John is at home and I am trying to work around him with the vacuum cleaner and Windex (lol). I feel bad having to ask him to move all the time. I called John at around 2:30 ish to see how he was doing, he said he was good and he was ready to be picked up. We had his niece's birthday to go to at 4pm that afternoon. I was a little concerned John had exerted all of his energy at Gary's. I picked him up and took him home to get ready for the party, he seemed pretty good. We went to the party for 4, I think he was a little nervous, Kevin's (John's brother) in-laws would be at the party and other family and friends. I am sure it must be hard walking into a back-yard filled with people and them all staring at you wondering if you are ok, etc. It was good. John had to explain a few times to different people his condition and treatment. He appeared to be ok. I felt bad. Thank God for his family, they truly are great people! They make the hard road so much easier to face. We left around 8 pm
(I know, long day for John).
I decided on Friday I was ready to go out with my friends on Saturday night. It took everything I had inside of me to do so. I felt horrible leaving him, I wanted him to be able to come with me . I had a good time going out and meeting my friends, but I can't lie, it just wasn't them same without him by my side. Every time someone asked about him, I felt a big lump in my throat, I just wanted to break down and cry. I held my tears back until I got in my car to drive home. I couldn't get there quick enough and see him. When I finally got home, it seemed like I was never going to get there. I got inside and found him fast asleep in bed with Oliver, he looked so peaceful...my two angels asleep...
HE EVEN CLEANED UP!!! We watched a movie together, did our usual flushing of his pic lines, and went to bed. Great night!
Saturday morning John decided he was going to go to his friend Gary's house. Gary was working in his yard, John said he was just going to watch. I was a little hesitant in him going, I know John he can't sit still, he will want to help Gary with whatever he is doing. I dropped him off at Gary's around 11ish, I went home and cleaned the house. This worked out great I can actually "clean-clean". It is hard when John is at home and I am trying to work around him with the vacuum cleaner and Windex (lol). I feel bad having to ask him to move all the time. I called John at around 2:30 ish to see how he was doing, he said he was good and he was ready to be picked up. We had his niece's birthday to go to at 4pm that afternoon. I was a little concerned John had exerted all of his energy at Gary's. I picked him up and took him home to get ready for the party, he seemed pretty good. We went to the party for 4, I think he was a little nervous, Kevin's (John's brother) in-laws would be at the party and other family and friends. I am sure it must be hard walking into a back-yard filled with people and them all staring at you wondering if you are ok, etc. It was good. John had to explain a few times to different people his condition and treatment. He appeared to be ok. I felt bad. Thank God for his family, they truly are great people! They make the hard road so much easier to face. We left around 8 pm
(I know, long day for John).
I decided on Friday I was ready to go out with my friends on Saturday night. It took everything I had inside of me to do so. I felt horrible leaving him, I wanted him to be able to come with me . I had a good time going out and meeting my friends, but I can't lie, it just wasn't them same without him by my side. Every time someone asked about him, I felt a big lump in my throat, I just wanted to break down and cry. I held my tears back until I got in my car to drive home. I couldn't get there quick enough and see him. When I finally got home, it seemed like I was never going to get there. I got inside and found him fast asleep in bed with Oliver, he looked so peaceful...my two angels asleep...
Friday, July 31, 2009
Thursday, Chemo treatment day
Yesterday John had chemo and spoke with his doctor, Dr. Castillo. I am so relieved John got to speak with the doctor face to face. The discussion was full of information on John's progress to date and what the days ahead hold for him. John asked all the right questions. The main question for that day was why wasn't John told about the bone marrow transplant earlier.
I had told John after our visit to Dana Farber, he has to give Dr. Castillo a fair chance. Keep in mind Dr. Castillo pretty much resurrected John from the brinks of death! Don't fly off the handle at Dr. Castillo for not telling you about the transplant, I am sure he has a good reason for doing that. Sure enough, Dr. Castillo is just what I suspected, a step by step personality. He told John, he would never lie to him, he would be very up front with John on his condition and what steps would be taken after each treatment. Which he has. He didn't want to get John all stressed out in the beginning (more than he already is) by tossing in "you may need a bone marrow transplant" John would be worried and stressed throughout the entire treatment process. It is bad enough what he has to deal with now. Dr. Castillo told John he is not receiving the same CHOP (chemo) treatment as everyone else who is being treated for Cancer. He has one more drug which is included in his CHOP. It appears by the test results John is improving with each treatment. All of John's platelets are just where they should be including all his all levels,and all of his organs are working just as they should be...whew! I almost forgot...John's blood level was an 11!!!! Are you kidding?!?!? EXCELLENT!
Dr. Castillo did explain the pros and cons of the transplant procedure. His plans for John are as follows; he will be getting a PET scan done next week. He needs to be sure the chemo treatment today is going to be doing it's job for an entire week and then the scan will be done. This scan will provide an abnormalities in his body. He will continue his chemo treatment until all 6 cycles are complete. Once the entire 6 cycles have been completed, John will have another PET Scan and a bone marrow test. IF, If all these test come back super, I am saying C-L-E-A-N, John has to make a very big decision to make. Do the bone marrow transplant or not do to the transplant?The doctor was leaning more towards if the test was CLEAN. John may not need to have the bone marrow transplant done. He would continue to see Dr. Castillo and be tested every 1-2 months. To be sure the cancer does NOT come back. This is a very serious and difficult decision to make. I am 100% by John's side, no matter what decision he makes. I love him and always will, no matter what is ahead of us, good or bad, I will be there to hold his hand and fight the good fight.
I send God my prayers today and everyday...I can only hope he has been listening....
I had told John after our visit to Dana Farber, he has to give Dr. Castillo a fair chance. Keep in mind Dr. Castillo pretty much resurrected John from the brinks of death! Don't fly off the handle at Dr. Castillo for not telling you about the transplant, I am sure he has a good reason for doing that. Sure enough, Dr. Castillo is just what I suspected, a step by step personality. He told John, he would never lie to him, he would be very up front with John on his condition and what steps would be taken after each treatment. Which he has. He didn't want to get John all stressed out in the beginning (more than he already is) by tossing in "you may need a bone marrow transplant" John would be worried and stressed throughout the entire treatment process. It is bad enough what he has to deal with now. Dr. Castillo told John he is not receiving the same CHOP (chemo) treatment as everyone else who is being treated for Cancer. He has one more drug which is included in his CHOP. It appears by the test results John is improving with each treatment. All of John's platelets are just where they should be including all his all levels,and all of his organs are working just as they should be...whew! I almost forgot...John's blood level was an 11!!!! Are you kidding?!?!? EXCELLENT!
Dr. Castillo did explain the pros and cons of the transplant procedure. His plans for John are as follows; he will be getting a PET scan done next week. He needs to be sure the chemo treatment today is going to be doing it's job for an entire week and then the scan will be done. This scan will provide an abnormalities in his body. He will continue his chemo treatment until all 6 cycles are complete. Once the entire 6 cycles have been completed, John will have another PET Scan and a bone marrow test. IF, If all these test come back super, I am saying C-L-E-A-N, John has to make a very big decision to make. Do the bone marrow transplant or not do to the transplant?The doctor was leaning more towards if the test was CLEAN. John may not need to have the bone marrow transplant done. He would continue to see Dr. Castillo and be tested every 1-2 months. To be sure the cancer does NOT come back. This is a very serious and difficult decision to make. I am 100% by John's side, no matter what decision he makes. I love him and always will, no matter what is ahead of us, good or bad, I will be there to hold his hand and fight the good fight.
I send God my prayers today and everyday...I can only hope he has been listening....
Wednesday, July 29, 2009
Dana Farber
John had an appointment at Dana Farber for a second opinion yesterday. Me, John and his sister went. Thank God to have a second pair of eyes and ears, besides John and me. Everyone knows once you enter a doctors office it is like sitting taking and exam. Every question or thought you had goes right out the window.
John met with this very informative doctor, Dr. Jacobsen is his name. He really shed light on the type of cancer John has and how it is being treated and why. I asked the doctor if he felt that his finding and the findings of Miriam Hospital were similar or the same. He said that his findings and the findings of Miriam Hospital are the same. However, this doctor sprung a bit of information on us that we were not prepared for. He told John yesterday he is going to need a bone marrow transplant. Dear Lord, what? I think that our mouths just dropped open. What? What? The doctor proceeded to explain: John would be treated with chemo 2x's a day, for 4 consecutive days. These large doses of chemotherapy and/or radiation are required to destroy the abnormal stem cells and abnormal blood cells. These therapies, however, not only kill the abnormal cells but can destroy normal cells found in the bone marrow as well. Similarly, aggressive chemotherapy used to treat some lymphomas and other cancers can destroy healthy bone marrow. A bone marrow transplant enables physicians to treat these diseases with aggressive chemotherapy and/or radiation by allowing replacement of the diseased or damaged bone marrow after the chemotherapy/radiation treatment. While bone marrow transplants do not provide 100 percent assurance that the disease will not recur, a transplant can increase the likelihood of a cure or at least prolong the period of disease-free survival for many patients.
John would need to be in the hospital at Dana Farber for 3 weeks!
There was so much information to absorb, so much to think about all in one day.
This procedure for John as not an option, he would need to have this transplant done.
Very scary. So many things were twirling around in my mind, a lot of "what if" What if it doesn't work? What if something goes wrong? The ride home was full of of questions, all so much to wrap my head around. I just wanted to get home with John and talk to him and see how he really felt. I know he must be scared, I am scared for him. I am sure he is so over this disease already. And again, why him? Why him? Out of all the people, why him? Life is just so unfair. My Mom would always say "God only gives you as much as you can handle" Really? I can say for myself, I have had my share, I don't want or need anymore tragedy in my life. Enough!
My poor John, I really hope this treatment does it's magic and makes this freakin' cancer GO AWAY! Tomorrow, chemo treatment, and PET SCAN. We will definately be having a conversation with his present doctor. Dr. Castillo. I want to know why we were never informed about this bone marrow transplant, and why wasn't there a meeting set up to discuss John's options after he completed his treatments? Very frustrating for John and for me. I am hoping tomrrow is a good day, please Lord, let it be a good day.
I miss JohnnyP. I get glimpses of him here and there, some days I forget he is sick....and then I wake up. My heart aches for him...I am angry for him....I love him so...please let him get get better....I miss him....
John met with this very informative doctor, Dr. Jacobsen is his name. He really shed light on the type of cancer John has and how it is being treated and why. I asked the doctor if he felt that his finding and the findings of Miriam Hospital were similar or the same. He said that his findings and the findings of Miriam Hospital are the same. However, this doctor sprung a bit of information on us that we were not prepared for. He told John yesterday he is going to need a bone marrow transplant. Dear Lord, what? I think that our mouths just dropped open. What? What? The doctor proceeded to explain: John would be treated with chemo 2x's a day, for 4 consecutive days. These large doses of chemotherapy and/or radiation are required to destroy the abnormal stem cells and abnormal blood cells. These therapies, however, not only kill the abnormal cells but can destroy normal cells found in the bone marrow as well. Similarly, aggressive chemotherapy used to treat some lymphomas and other cancers can destroy healthy bone marrow. A bone marrow transplant enables physicians to treat these diseases with aggressive chemotherapy and/or radiation by allowing replacement of the diseased or damaged bone marrow after the chemotherapy/radiation treatment. While bone marrow transplants do not provide 100 percent assurance that the disease will not recur, a transplant can increase the likelihood of a cure or at least prolong the period of disease-free survival for many patients.
John would need to be in the hospital at Dana Farber for 3 weeks!
There was so much information to absorb, so much to think about all in one day.
This procedure for John as not an option, he would need to have this transplant done.
Very scary. So many things were twirling around in my mind, a lot of "what if" What if it doesn't work? What if something goes wrong? The ride home was full of of questions, all so much to wrap my head around. I just wanted to get home with John and talk to him and see how he really felt. I know he must be scared, I am scared for him. I am sure he is so over this disease already. And again, why him? Why him? Out of all the people, why him? Life is just so unfair. My Mom would always say "God only gives you as much as you can handle" Really? I can say for myself, I have had my share, I don't want or need anymore tragedy in my life. Enough!
My poor John, I really hope this treatment does it's magic and makes this freakin' cancer GO AWAY! Tomorrow, chemo treatment, and PET SCAN. We will definately be having a conversation with his present doctor. Dr. Castillo. I want to know why we were never informed about this bone marrow transplant, and why wasn't there a meeting set up to discuss John's options after he completed his treatments? Very frustrating for John and for me. I am hoping tomrrow is a good day, please Lord, let it be a good day.
I miss JohnnyP. I get glimpses of him here and there, some days I forget he is sick....and then I wake up. My heart aches for him...I am angry for him....I love him so...please let him get get better....I miss him....
Monday, July 27, 2009
This past weekend...
What a great weekend we had! It was just like John didn't even have this horrible disease.
My sister, John, myself and our friend Dot took a ride to Jamestown. My sister's favorite getaway. She wanted to show John her favorite places that she goes to "getaway". We had lunch at Trattoria Simpatico, what a great place to sit outside and have lunch, or even just to sit and people watch.After lunch we went took "The Chris Warren Tour Of Jamestown". We went to Beavertail, Fort Wetheral (sp?), we went sight seeing thru the neighborhoods of Jamestown, it was really a fun day.
I know it made John feel good, I could see it in his eyes, those big beautiful brown eyes! Filled with joy for the day, it made my heart feel good to see him like that...I wish everyday could be like that...
My sister, John, myself and our friend Dot took a ride to Jamestown. My sister's favorite getaway. She wanted to show John her favorite places that she goes to "getaway". We had lunch at Trattoria Simpatico, what a great place to sit outside and have lunch, or even just to sit and people watch.After lunch we went took "The Chris Warren Tour Of Jamestown". We went to Beavertail, Fort Wetheral (sp?), we went sight seeing thru the neighborhoods of Jamestown, it was really a fun day.
I know it made John feel good, I could see it in his eyes, those big beautiful brown eyes! Filled with joy for the day, it made my heart feel good to see him like that...I wish everyday could be like that...
Friday, July 24, 2009
Friday....
John has had yet another good week! He really does look good considering what he has been going thru. I think the chemo is doing it's job. He went for blood work yesterday, he has to go every week to see what his count is. He has had so much trouble keeping it to where it should be. He contacted the doctor's office this morning it is a 9.6! I know it sounds crazy that we get so excited he is at a 9.6. The normal count should be 12-14.
Gina (his sister) and his Mom stopped by this morning and their way back from his Mom's PT session. He had some breakfast, we chatted for a bit, Dana Farber called to confirm his appointment on Tues, the 28th. We can't wait to go, we need some concrete answers on John's condition. This will be John's second opinion and what steps should be taken, meaning should he continue on with Miriam and his doctor's at that facility or go with Dana Farber.
Gina and Carol (his Mom) had to go, Gina had to go pick up Steven (John's nephew). They left and I had to leave myself to go to work.
My sister called last night, she may stop by. John said he may go to his sister's, he wasn't sure.
I will check in today with him at least two to three times, can never be sure sure...I am always at ease when I hear his voice...
Gina (his sister) and his Mom stopped by this morning and their way back from his Mom's PT session. He had some breakfast, we chatted for a bit, Dana Farber called to confirm his appointment on Tues, the 28th. We can't wait to go, we need some concrete answers on John's condition. This will be John's second opinion and what steps should be taken, meaning should he continue on with Miriam and his doctor's at that facility or go with Dana Farber.
Gina and Carol (his Mom) had to go, Gina had to go pick up Steven (John's nephew). They left and I had to leave myself to go to work.
My sister called last night, she may stop by. John said he may go to his sister's, he wasn't sure.
I will check in today with him at least two to three times, can never be sure sure...I am always at ease when I hear his voice...
Day after fishing...
I took the day off yesterday to spend with John, I like to see him having something to do each day. I thought maybe if he was feeling up to it we could go for a ride, maybe go to the Christmas Tree shop, pick up an ottoman for our friend Dot (that is an entirely different story for a different day). He woke up in a pretty good state of mind yesterday, he said he was having little aches and pains here and there, he thinks it was all the fun he had fishing the day before. Which would make sense, since he really hadn't done anything physical for weeks. He decided he would rather stay in then go out, maybe take a little cat nap. I decided to catch up on some cleaning and maybe go to the store get a few things. He said that was fine, I think he was at ease that I was going to be around and at home with him. I don't mind in the least, I would do anything for him, anything! We watched some TV together for a little bit, I went to the store for an hour or so, came back and made some dinner. Then we did our normal routine, flush his lines, take his vitals, once that is done he is usually ready for snack time! Too funny, he is hooked on sherbet now, and frozen yogurt. All in all he had a pretty good night.
Wednesday, July 22, 2009
Fishing today...
My sister is coming over today to take him fishing, John's favorite. I could see it in his face this morning he was excited, but holding back a little bit, I feel he is still unsure of how or what is going to happen once he is out and about. I feel more at ease when he is with someone, especially someone who would do absolutely anything for him...my sister being one of those people. She is truly a good soul.I am at work now, I will check in with him a little later to be sure he is ok, which I am sure he will be fine, but it makes me feel better just to hear his voice and know he is ok.
Today has been one week since treatment on 7/16/09
I didn't post anything yesterday, I will post it today.
It has been one full week since John received his chemo treatment.
This so called miracle drug has now been in his system, hopefully doing it's job, which it "appears" to be.
John's day started off pretty rocky, he knew he was to be weened off of the prednizone (another miracle drug), he would be going from 12o m to 20 m, this could be dangerous from all aspects. John contacts the Fain Center where his doctor and nurse are. They are pretty certain in their instructions, take 20 m once a day for the next week. John follows his instructions with hesitation, he doesn't know what is going what kind of reaction his body is going to have to this drastic change in medication. Anyone who knows someone who has ever taken prednizone, it is a strong medication.
I proceed to go to work after John eats his breakfast, we pretty much have the same routine now. I leave for work thinking I hope everything is going to be ok. I will be sure to call him once I get to work just to be sure he is ok. I need to hear the sound of his voice, how it sounds, I can usually can tell how he feels just by the tone of his voice. Always have, ever since I have known him. The tone of his voice sounded discouraged. I know he is getting very bored. He wants to go out and be able to drive, but I think he is still unsure of himself and afraid to take the chance.
He tries to keep himself busy, the best he knows how. He has been doing these word search puzzles, they are all over the house, each with a pen stuck in the page he was working on.
He has moved on to playing solitaire on the computer, which is good at least it keeps his mind busy. He told me he was feeling pretty good, Claudia had stopped by with some dinner for him (one of his favorites-chicken parm!). He was "pumped" as he would say. I asked him if he wanted me to pick anything up on the way home from work, he said he was good.
I walk in the door from work and get my usual greeting from the best dog ever! Oliver! Daddy's little buddy! John is still playing solitaire on the computer. He had started boiling a pot of water for some maccaroni to go with the chicken parm. I make the maccaroni, put it in a bowl, heat up the chicken parm and then here it comes..."the prednizone swing" (I have named it that). John comes over to the counter looking down at the bowl of maccaroni and plate of chicken parm with a question "where is the gravy?" "NO GRAVY! OH COME ON! " At that time in his mind dinner was ruined. He takes his plate and sits down on the couch and starts swishing around the maccaroni on his plate around the chicken parm, not good. Picks up his plate and comes to the counter, slams the plate down, digs around in the chicken parm dish for some cheese, throws a piece of cheese onto his portion of chicken parm, throws the plate into the microwave and asks me "WHY COULDN'T YOU HAVE DONE THAT!" I look in a daze...what? Then I think to myself...PREDNIZONE, here is the mood swing from the lack of the prednizone. I count to ten, turn away from the counter, turn back around and by that time John is back on the couch with his plate. I get my plate ready and walk over to sit with him to have dinner. "John" is back now, his evil prednizone twin has left. The mood has become almost jovil. He is now asking how my day was, what went on at work, etc. And that was dinner....
The evening is pretty much a normal evening. After dinner, I flush his lines out, (he has a pic line ) take his temp, and vitals. His vitals have been pretty consistant, there have been one or two days they have been off, but all in all they have been great.
We usually will watch some TV together until one of his favorite shows comes on, which of course is not one of mine. I always move to the bedroom, it is the norm for us. I have been falling asleep pretty early, I try to stay awake for as long as possible, doesn't always work out in my favor. John has been coming to bed a little late, this night in particular he took a shower and came to bed around midnight and slept thru the night (even over the dog wanting to go out at 2:00 a.m! Oliver!)
It has been one full week since John received his chemo treatment.
This so called miracle drug has now been in his system, hopefully doing it's job, which it "appears" to be.
John's day started off pretty rocky, he knew he was to be weened off of the prednizone (another miracle drug), he would be going from 12o m to 20 m, this could be dangerous from all aspects. John contacts the Fain Center where his doctor and nurse are. They are pretty certain in their instructions, take 20 m once a day for the next week. John follows his instructions with hesitation, he doesn't know what is going what kind of reaction his body is going to have to this drastic change in medication. Anyone who knows someone who has ever taken prednizone, it is a strong medication.
I proceed to go to work after John eats his breakfast, we pretty much have the same routine now. I leave for work thinking I hope everything is going to be ok. I will be sure to call him once I get to work just to be sure he is ok. I need to hear the sound of his voice, how it sounds, I can usually can tell how he feels just by the tone of his voice. Always have, ever since I have known him. The tone of his voice sounded discouraged. I know he is getting very bored. He wants to go out and be able to drive, but I think he is still unsure of himself and afraid to take the chance.
He tries to keep himself busy, the best he knows how. He has been doing these word search puzzles, they are all over the house, each with a pen stuck in the page he was working on.
He has moved on to playing solitaire on the computer, which is good at least it keeps his mind busy. He told me he was feeling pretty good, Claudia had stopped by with some dinner for him (one of his favorites-chicken parm!). He was "pumped" as he would say. I asked him if he wanted me to pick anything up on the way home from work, he said he was good.
I walk in the door from work and get my usual greeting from the best dog ever! Oliver! Daddy's little buddy! John is still playing solitaire on the computer. He had started boiling a pot of water for some maccaroni to go with the chicken parm. I make the maccaroni, put it in a bowl, heat up the chicken parm and then here it comes..."the prednizone swing" (I have named it that). John comes over to the counter looking down at the bowl of maccaroni and plate of chicken parm with a question "where is the gravy?" "NO GRAVY! OH COME ON! " At that time in his mind dinner was ruined. He takes his plate and sits down on the couch and starts swishing around the maccaroni on his plate around the chicken parm, not good. Picks up his plate and comes to the counter, slams the plate down, digs around in the chicken parm dish for some cheese, throws a piece of cheese onto his portion of chicken parm, throws the plate into the microwave and asks me "WHY COULDN'T YOU HAVE DONE THAT!" I look in a daze...what? Then I think to myself...PREDNIZONE, here is the mood swing from the lack of the prednizone. I count to ten, turn away from the counter, turn back around and by that time John is back on the couch with his plate. I get my plate ready and walk over to sit with him to have dinner. "John" is back now, his evil prednizone twin has left. The mood has become almost jovil. He is now asking how my day was, what went on at work, etc. And that was dinner....
The evening is pretty much a normal evening. After dinner, I flush his lines out, (he has a pic line ) take his temp, and vitals. His vitals have been pretty consistant, there have been one or two days they have been off, but all in all they have been great.
We usually will watch some TV together until one of his favorite shows comes on, which of course is not one of mine. I always move to the bedroom, it is the norm for us. I have been falling asleep pretty early, I try to stay awake for as long as possible, doesn't always work out in my favor. John has been coming to bed a little late, this night in particular he took a shower and came to bed around midnight and slept thru the night (even over the dog wanting to go out at 2:00 a.m! Oliver!)
The Diagnosis...
I am writing my thoughts and feelings about John and the journey ahead…
John was diagnosed in June with this horrible disease called T-Cell lymphoma, and Epstein Barr. I can’t believe it has already been two months. I wake up everyday thinking this has all been a nightmare, John is fine, and everything is normal.
My thoughts are so jumbled, each day is so different. John could be having a great morning, which could turn into a great day. I love the great days! However tomorrow is always right around the corner and you never know what tomorrow is going to bring.
When the good days are good, they are even great. When the bad days are bad, they are just the worst. On the bad days, I try to hold back my tears, I don’t want to shed them in front of him, then I think to myself I hope he doesn’t think I don’t care. That is not the case at all. I hold back my tears and take them with me to the shower, in the basement or in the car. These are the places where I release my tears which are filled with hurt and anger for John. I can’t bear the thought of him thinking this is a burden on me or anyone. I know that is how he feels at times. It is just the way John is.
I can honestly say I care more for this man than I have ever cared for any other man in my life. He has enriched my life in so many ways I feel I just can’t do enough for him.
I wish I had the cure to end this nightmare for John and for everyone else who has been inflicted with this horrible disease. I don’t know why John has this disease he doesn’t deserve it. No one does.
John is truly a good hearted soul. So full of compassion and thoughtfulness, his smile so infectious, just fills your heart. The love his family has for him is immeasurable, he is truly blessed. I am so thankful for the love and the generosity it makes things almost easy enough to bear, no matter how hard this road is going to get for us, we can hit the bumps and get over all of them.
"There is no medicine like hope, no incentive so great, and no tonic so powerful as expectation of something tomorrow."
John was diagnosed in June with this horrible disease called T-Cell lymphoma, and Epstein Barr. I can’t believe it has already been two months. I wake up everyday thinking this has all been a nightmare, John is fine, and everything is normal.
My thoughts are so jumbled, each day is so different. John could be having a great morning, which could turn into a great day. I love the great days! However tomorrow is always right around the corner and you never know what tomorrow is going to bring.
When the good days are good, they are even great. When the bad days are bad, they are just the worst. On the bad days, I try to hold back my tears, I don’t want to shed them in front of him, then I think to myself I hope he doesn’t think I don’t care. That is not the case at all. I hold back my tears and take them with me to the shower, in the basement or in the car. These are the places where I release my tears which are filled with hurt and anger for John. I can’t bear the thought of him thinking this is a burden on me or anyone. I know that is how he feels at times. It is just the way John is.
I can honestly say I care more for this man than I have ever cared for any other man in my life. He has enriched my life in so many ways I feel I just can’t do enough for him.
I wish I had the cure to end this nightmare for John and for everyone else who has been inflicted with this horrible disease. I don’t know why John has this disease he doesn’t deserve it. No one does.
John is truly a good hearted soul. So full of compassion and thoughtfulness, his smile so infectious, just fills your heart. The love his family has for him is immeasurable, he is truly blessed. I am so thankful for the love and the generosity it makes things almost easy enough to bear, no matter how hard this road is going to get for us, we can hit the bumps and get over all of them.
"There is no medicine like hope, no incentive so great, and no tonic so powerful as expectation of something tomorrow."
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