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
Wednesday, September 16, 2009
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.
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