day 15
The day is done, and I'm now completely bald! and clean
shaven! yow! Hopefully people will recognize me by the time I get back
to work. Eating a bit more, but they keep on mixing up my food here at
the hospital. Getting a day pass tomorrow, and hopefully an overnight
one! REALLY looking forward to that. Doctor is still a bit surprised at
how well my mouth is doing with the sores, which are pretty much gone,
and my counts were up again today! yay! The only thing bugging me now
is a swollen throat from the mouth sores. I'm told a couple of more
days, and that should be cleared up to.
Day 14
Well, day 14 has come and gone. An okay day, extremely frustrating for work though. It always surprises me how a single person panicking can ruin your whole day. But, that's what I get paid for, I suppose. Nausea was less, eating more and more, which is really good. Doctor told me today that I'm ahead of schedule which is awesome! I'm having to get my wife to bring in food from home now, I just can't eat the food here (insert hospital food joke here) but that's a hurdle easily overcome. I haven't had to use pain medication for a couple of days now, which is great.
One unfortunate thing, some idiot showed up on the hospital floor with h1n1, so the unit is now in complete lockdown. No visitors, unless they have had the h1n1 shot. I wish people would smarten up and wash their hands and cough into their sleeves. Oh, I have now lost all my facial hair! yow!
One unfortunate thing, some idiot showed up on the hospital floor with h1n1, so the unit is now in complete lockdown. No visitors, unless they have had the h1n1 shot. I wish people would smarten up and wash their hands and cough into their sleeves. Oh, I have now lost all my facial hair! yow!
feeling good Day 10
uh oh, this
just in!! looks like the hair is starting to fall out now!! guess where
it started, the sides of my stache! arhhhhh. not the stache! ah well,
it's coming out in clumps now, so i guess the statche and goatee will
go sometime tomorrow... sigh, goodby old friend, you were a good
soupstrainer, you were ..... 8-(
sorry about not updating the last week. got a but busy at work, plus you can only say, jeez, I'm nauseous again, got the runs again, really tired so many times. I'll properly update tomorrow.
Key points:
losing weight, but not too bad, they are hydrating the heck out of me so it looks like I actually gain weight without eating anything.
quite nauseous, but much, much better now.
moths sores hurt like the dickens, but I guess that's why they give nurses morphine to hand out!
feeling good, rough day, very tired, got a couple of things done. not very nauseous anymore! woo hooo! there's always something to brighten up your day! Really, Really looking forward to being rid of mouth sores and rid of being nauseous!
Oh, and blessed are the ones that created medicated wipes, and creams! They should get their own parade at least once a week!
Key points:
losing weight, but not too bad, they are hydrating the heck out of me so it looks like I actually gain weight without eating anything.
quite nauseous, but much, much better now.
moths sores hurt like the dickens, but I guess that's why they give nurses morphine to hand out!
feeling good, rough day, very tired, got a couple of things done. not very nauseous anymore! woo hooo! there's always something to brighten up your day! Really, Really looking forward to being rid of mouth sores and rid of being nauseous!
Oh, and blessed are the ones that created medicated wipes, and creams! They should get their own parade at least once a week!
Day 0
Okay folks, I guess I have to apologize, I was naming the
days wrong! The hospital considers the actual transplant as day 0, so
I'll start to use their naming convention.
All right, on to the news. Great day! First good news, no reaction to the chemo today, hurray! Did a couple of things different, kept a lot more clothes on. The nurses were quite grateful for that.....
And really watched what my body temperature was like during and after chemo. If I felt cool, put on a blanket, going toward warm, slippers off. Very simple and common sense, but it worked for me, no chills, no fever! whoo hoo!
Now on the other good stuff! My brothers donation started approximately 9:30 this morning, and finished at 1:30 this aft. They then cleaned up the stem cell donation, did whatever else they do to it, then brought it to me at about 5:00, done by 5:25!!! Yup, that's what I said 5:25! Two nurses brought it in, hooked me to the iv, took my vitals before, during and after, and all done! Family was all here, even by skype, which was awesome. I have the best family, best friends, and best support network, bar none! I believe that has been one of the guiding factors helping me along this interesting adventure. Not mention the best medical team around. I don't think I said it enough, these people ROCK! 8-)
I am feeling great tonight, and guess what, sounds like I'm home on day pass tomorrow! They tell me I should feel fine tonight and tomorrow, then the chemo side effects should start kicking in. I've already started to think about the process I will need to follow starting tomorrow and I will document it for posterity, starting tomorrow! ha! Pretty lackluster day, which for me was fantastic!
JBates signing off till tomorrow and into a new future! 8-)
All right, on to the news. Great day! First good news, no reaction to the chemo today, hurray! Did a couple of things different, kept a lot more clothes on. The nurses were quite grateful for that.....
And really watched what my body temperature was like during and after chemo. If I felt cool, put on a blanket, going toward warm, slippers off. Very simple and common sense, but it worked for me, no chills, no fever! whoo hoo!
Now on the other good stuff! My brothers donation started approximately 9:30 this morning, and finished at 1:30 this aft. They then cleaned up the stem cell donation, did whatever else they do to it, then brought it to me at about 5:00, done by 5:25!!! Yup, that's what I said 5:25! Two nurses brought it in, hooked me to the iv, took my vitals before, during and after, and all done! Family was all here, even by skype, which was awesome. I have the best family, best friends, and best support network, bar none! I believe that has been one of the guiding factors helping me along this interesting adventure. Not mention the best medical team around. I don't think I said it enough, these people ROCK! 8-)
I am feeling great tonight, and guess what, sounds like I'm home on day pass tomorrow! They tell me I should feel fine tonight and tomorrow, then the chemo side effects should start kicking in. I've already started to think about the process I will need to follow starting tomorrow and I will document it for posterity, starting tomorrow! ha! Pretty lackluster day, which for me was fantastic!
JBates signing off till tomorrow and into a new future! 8-)
day 7 and 8
Hi Folks,
Wow, tomorrow is the big day. And what a couple of days the last 2 have been. So last night, Monday afternoon, my body did something I hadn't approved. It had a reaction to the atg chemo. Wich meant some interesting shivers which then turn into a nice high temperature. I peaked at 39.9, a new record for me. So I did my usual response, body too hot, drink lots of cold water, and take (almost) all my clothes off. I created a bit of stir I did. But if anybody knocked and I heard them, I did warn them, semi naked guy sweating like hell. So between nausea, shivers, and then high fever, oh, I forgot I now have a bit of irregular hear beat to. And to add to the humility, I had to ask the nurse about bladder control. People, I may joke about cancer, but it is a piece of crap that needs to be taken care of. I'm going to start a new page outlining the high cost for us, with a bit of humility put in. And buy that, I am talking about the difficulty in coming to terms with this, paying for things a lot of people can't afford, The difficulty of having to accept help. Having to realize that you may be losing control of some your body. (my personal favorite portion of the adventure so far, kidding so much, my head hurts). 8-)
Okay, enough ranting for the moment. Today, Tuesday, day before the transplant, almost same frigging thing as yesterday. Except earlier…..As I type this, the shivers are done, into the fever portion now, down from 38.4 to 38.2. woo hoo! I take my pluses when I gets 'em.
I will update the blog tomorrow and the next day, but will not be sending out any emails for a couple of days, unless someone has any questions. Yes, you in the back? Is there any way we can help John?
1: Lots and lots of prayers and positive energy for the next couple of days, if not week. It does not matter if it is prayer, good thoughts, mantras, good wishes. It all helps and I greatly appreciate all of them.
2: Please do not send flowers, candy (okay maybe a little fudge, no nuts please), not even silk flowers…. 8-(
3: Food, near and dear to my heart. I had an interesting discussion with one of the nurses. Someone may be able to bring in a small deep dish pizza, but we need to organize this, I don't need 20 small deep dish pizzas showing up at once! Well okay, if I wasn't semi quarantined and in the hospital, yes, yes I would, but over the next couple of weeks, let’s organize.
4: I luv cards! Personalize them please, and make them colourful, bright, happy, please and thank you.
Please don’t feel that you have to do any of the above, except #1, that's mandatory for all of you. 8-)
If you want to do any of the above, that makes it special to me, that's awesome it's all greatly appreciate, especially the awesome support I receive from all of you!
If you are thinking of other items, being the brains that you all are, could you please coordinate with Barb T? thanks!
Facebook page setup for me by an awesome granddaughter Adrianna: http://www.facebook.com/home.php?#/group.php?gid=183407786579
Unfortunately you have to have facebook account to access it. Sorry.
So if you want my home mail address, leave me a private comment or sign my guest-book, please.
Wow, tomorrow is the big day. And what a couple of days the last 2 have been. So last night, Monday afternoon, my body did something I hadn't approved. It had a reaction to the atg chemo. Wich meant some interesting shivers which then turn into a nice high temperature. I peaked at 39.9, a new record for me. So I did my usual response, body too hot, drink lots of cold water, and take (almost) all my clothes off. I created a bit of stir I did. But if anybody knocked and I heard them, I did warn them, semi naked guy sweating like hell. So between nausea, shivers, and then high fever, oh, I forgot I now have a bit of irregular hear beat to. And to add to the humility, I had to ask the nurse about bladder control. People, I may joke about cancer, but it is a piece of crap that needs to be taken care of. I'm going to start a new page outlining the high cost for us, with a bit of humility put in. And buy that, I am talking about the difficulty in coming to terms with this, paying for things a lot of people can't afford, The difficulty of having to accept help. Having to realize that you may be losing control of some your body. (my personal favorite portion of the adventure so far, kidding so much, my head hurts). 8-)
Okay, enough ranting for the moment. Today, Tuesday, day before the transplant, almost same frigging thing as yesterday. Except earlier…..As I type this, the shivers are done, into the fever portion now, down from 38.4 to 38.2. woo hoo! I take my pluses when I gets 'em.
I will update the blog tomorrow and the next day, but will not be sending out any emails for a couple of days, unless someone has any questions. Yes, you in the back? Is there any way we can help John?
1: Lots and lots of prayers and positive energy for the next couple of days, if not week. It does not matter if it is prayer, good thoughts, mantras, good wishes. It all helps and I greatly appreciate all of them.
2: Please do not send flowers, candy (okay maybe a little fudge, no nuts please), not even silk flowers…. 8-(
3: Food, near and dear to my heart. I had an interesting discussion with one of the nurses. Someone may be able to bring in a small deep dish pizza, but we need to organize this, I don't need 20 small deep dish pizzas showing up at once! Well okay, if I wasn't semi quarantined and in the hospital, yes, yes I would, but over the next couple of weeks, let’s organize.
4: I luv cards! Personalize them please, and make them colourful, bright, happy, please and thank you.
Please don’t feel that you have to do any of the above, except #1, that's mandatory for all of you. 8-)
If you want to do any of the above, that makes it special to me, that's awesome it's all greatly appreciate, especially the awesome support I receive from all of you!
If you are thinking of other items, being the brains that you all are, could you please coordinate with Barb T? thanks!
Facebook page setup for me by an awesome granddaughter Adrianna: http://www.facebook.com/home.php?#/group.php?gid=183407786579
Unfortunately you have to have facebook account to access it. Sorry.
So if you want my home mail address, leave me a private comment or sign my guest-book, please.
Stem Cell Transplant Process - Day 6 Sunday
My brother and my wife and granddaughter all showed up at the same time! Woo Hoo! Good visit.
Still receiving Fludarabine and Busulfan for chemo. Uneventful day, the Sundays should be. Question of the day: If codeine makes you nauseous, at how much pain would you need to be in to take it? My answer to that, and more riveting questions, next week. Tomorrow they add Antithymocyte and then things get interesting. I'm told to expect nausea, maybe some vertigo and mouth sores within 7 days!
Nurses are still surprised that I'm not really nauseous, I hope to keep surprising them on that! I'm starting to get tired, I am not able to sleep through the night at all. They have me on extra hydration and drinking lots of water so you know where I spend most of my time, every couple of hours at night. Not to mention the iv bag changes, the vital signs being taken and then being told to get my rest! Wow, I love people with a sense of humor!
Feet were swollen up and so I started walking in my room. That fixed up the feet quickly. I tried to do some of the recommend exercises yesterday, but I think I'll hold off on that again until things heal a bit more. Monday, Tuesday, then launch day!
Still receiving Fludarabine and Busulfan for chemo. Uneventful day, the Sundays should be. Question of the day: If codeine makes you nauseous, at how much pain would you need to be in to take it? My answer to that, and more riveting questions, next week. Tomorrow they add Antithymocyte and then things get interesting. I'm told to expect nausea, maybe some vertigo and mouth sores within 7 days!
Nurses are still surprised that I'm not really nauseous, I hope to keep surprising them on that! I'm starting to get tired, I am not able to sleep through the night at all. They have me on extra hydration and drinking lots of water so you know where I spend most of my time, every couple of hours at night. Not to mention the iv bag changes, the vital signs being taken and then being told to get my rest! Wow, I love people with a sense of humor!
Feet were swollen up and so I started walking in my room. That fixed up the feet quickly. I tried to do some of the recommend exercises yesterday, but I think I'll hold off on that again until things heal a bit more. Monday, Tuesday, then launch day!
Stem Cell Transplant Process - Day 5 Saturday
Long day with
chemo, kinda boring. More blood taken, then surprised the on call doc
by telling her, nope, sorry, still not nauseous. Then a huge surprise,
my brother/donor showed up! That was a very pleasant surprise! I had a
great visit with him and then shortly after he left, my wife and
granddaughter #1 showed up! We had a nice visit, then when they went
home I spent the next 2 hours fixing my web cam set ups again..... 8-)
Stem Cell Transplant Process - Day 4 Friday
Friday, uneventful
day, as busy as Fridays ever get. I had every intention of going home
until the stupid snow hit Calgary. I told my wife to turnaround and
just go home, it definitely wasn't worth either her nor my
granddaughter to get hurt so I could go home. Interesting though, get
woke up every 4 hours or so for blood work, but make sure you get rest.
ha!
Stem Cell Transplant Process - Day 3 Thursday
Wow, busy, busy days! And I haven't even had the stem cell transplant yet!
Ah well, so far, test chemo dose on Tuesday, dose 1 on Wednesday, dose 2 today! I was told to expect some nausea, but nothing. woo hoo! In the hospital at 8:00, gone by 11:15. So I continue to surprise the medical staff. My nurse told me that they were shocked to see me in the ward since I still have hair. Apparently, I get to lose it over the next few weeks again. Personally, I don't mind being bald, it means I don't have to shave as often either, ha! The other thing that surprised her was that my cvc in my chest hadn't bled at all so the dressing didn't have to be changed. Again, woo hoo! Busy day because work was very busy. Helped make the time go by quicker.
Ah well, so far, test chemo dose on Tuesday, dose 1 on Wednesday, dose 2 today! I was told to expect some nausea, but nothing. woo hoo! In the hospital at 8:00, gone by 11:15. So I continue to surprise the medical staff. My nurse told me that they were shocked to see me in the ward since I still have hair. Apparently, I get to lose it over the next few weeks again. Personally, I don't mind being bald, it means I don't have to shave as often either, ha! The other thing that surprised her was that my cvc in my chest hadn't bled at all so the dressing didn't have to be changed. Again, woo hoo! Busy day because work was very busy. Helped make the time go by quicker.
Stem Cell Transplant Process - Day 2 Wednesday
Survived the
night, boy, was my neck ever sore! It felt like I had been wrestling a
pro wrestler! Thankfully, most of the soreness was gone early this
morning, and I didn't have to take a pain pill at all today! woo hoo!
So I had my test chemo, no problems so far. The test chemo lasted about
45 minutes, then they hydrated me for the rest of the day. So I was
still hooked to the iv from 8:30 - 5 today. Oh and then 2 tubes of
blood taken, every hour from 9 till about 5. No wonder I feel tired.
Thank goodness the laptop works like a charm so I can work without any
issues. hmmm, that just doesn't sound right! 8-)
The dressing was taken off of my neck and it was changed on my chest. It's going to take a bit to get used to having something dangling out of my chest, but it's quite doable. The doctor came in, told me the enzyme count in my liver was a bit off, and voila, pills to take! It looks like I better get used to that in a hurry cuz there's a lot more pills coming my way. Saw the physiotherapist also. She was a little surprised my balance was as good as it was and that I still had strength in my shoulders. She gave me some exercises and a band to use during my stay and beyond. I am planning on continuing to surprise them throughout this process! Oh, have I said how much these people rock yet? Very nice people, very caring and supportive. My supper showed up as I was leaving, and the fellow didn't mind that I wasn't going to eat it, but he was quite concerned that I had a ride coming! Wow! I guess he must have seen people stranded!
The incision sites are still a bit sore and the amount of itchiness should drive me nuts by the weekend. But if that's the worst thing I have to worry about, I'm buying lottery tickets this weekend!
The dressing was taken off of my neck and it was changed on my chest. It's going to take a bit to get used to having something dangling out of my chest, but it's quite doable. The doctor came in, told me the enzyme count in my liver was a bit off, and voila, pills to take! It looks like I better get used to that in a hurry cuz there's a lot more pills coming my way. Saw the physiotherapist also. She was a little surprised my balance was as good as it was and that I still had strength in my shoulders. She gave me some exercises and a band to use during my stay and beyond. I am planning on continuing to surprise them throughout this process! Oh, have I said how much these people rock yet? Very nice people, very caring and supportive. My supper showed up as I was leaving, and the fellow didn't mind that I wasn't going to eat it, but he was quite concerned that I had a ride coming! Wow! I guess he must have seen people stranded!
The incision sites are still a bit sore and the amount of itchiness should drive me nuts by the weekend. But if that's the worst thing I have to worry about, I'm buying lottery tickets this weekend!
John and Jaclyn update #3 Tuesday
All good news day!
Jaclyn is improving on a daily basis. She finally gets her son, RJ home to! woo hoo! She is speaking better, walking more, and her appetite has greatly improved.
So Tuesday was quite an interesting one for me. Started with a blood test, 10 tubes this time! Then off to get admitted, just a bit of paperwork there. Then up to the unit I will be staying at for awhile, but not quite yet. They put me in a temporary room, told be that unless there were issues, I would go home tonight, hmmmm. Well I wound up in a hospital gown and got wheeled down to radiology for center line (cvc) implant. Very interesting experience. A little different than I thought, it was actually put in the jugular, then tunneled under the skin to exit out in my upper chest. They used a very interesting ultrasound machine to locate the vein, put in the cvc, then tunnel it down to where it needed to go. Way cool stuff, wish I would have had the camera to take pictures of the equipment. The docs, nurses, assistants, and porters were all awesome people. Unfortunately for me, not only do I have strong bones, i also have tough skin and it took a bit more work for them to put the cvc in. No pain from the operation, but my neck is quite sore since it took more work work than usual to get it done. So now I have my teeth healing, my bone marrow biopsy almost healed, and now a new wound! It just doesn't get any better than that! 8-)
My granddaughter Adrianna has started a facebook for me so please check it out, and pass it on!
http://www.facebook.com/home.php?ref=home#/group.php?v=wall&gid=183407786579
Wednesday is my test chemo day. Should be quite boring (I hope) and yet, another new experience for me!
Jaclyn is improving on a daily basis. She finally gets her son, RJ home to! woo hoo! She is speaking better, walking more, and her appetite has greatly improved.
So Tuesday was quite an interesting one for me. Started with a blood test, 10 tubes this time! Then off to get admitted, just a bit of paperwork there. Then up to the unit I will be staying at for awhile, but not quite yet. They put me in a temporary room, told be that unless there were issues, I would go home tonight, hmmmm. Well I wound up in a hospital gown and got wheeled down to radiology for center line (cvc) implant. Very interesting experience. A little different than I thought, it was actually put in the jugular, then tunneled under the skin to exit out in my upper chest. They used a very interesting ultrasound machine to locate the vein, put in the cvc, then tunnel it down to where it needed to go. Way cool stuff, wish I would have had the camera to take pictures of the equipment. The docs, nurses, assistants, and porters were all awesome people. Unfortunately for me, not only do I have strong bones, i also have tough skin and it took a bit more work for them to put the cvc in. No pain from the operation, but my neck is quite sore since it took more work work than usual to get it done. So now I have my teeth healing, my bone marrow biopsy almost healed, and now a new wound! It just doesn't get any better than that! 8-)
My granddaughter Adrianna has started a facebook for me so please check it out, and pass it on!
http://www.facebook.com/home.php?ref=home#/group.php?v=wall&gid=183407786579
Wednesday is my test chemo day. Should be quite boring (I hope) and yet, another new experience for me!
John and Jaclyn update #2
So it's good news all around! My daughter has been out of the icu since
Sunday and in her own room. She is now off of the ventilator, fully
conscious and able to speak, use the computer, and swear at people!
Life is good. I still can't see her because she is still contagious,
but at least she isn't in danger anymore! I got to see her last night!
Sort of... I was able to get a webcam system set up and her fiance set
up the webcam on their notebook. Yay for skype! Video and audio was
choppy, but at least we were able to finally talk.
7 days left! Then I start the stem cell transplant process. woo hoo? hmmmm, 8-)
One more of my tests is now complete. I survived my bone marrow biopsy and aspiration on late Monday afternoon. woo hoo! I did not have sedation for it, only local anesthetic. The doctor had a bit of trouble removing a sample of bone from my left hip bone marrow, (my bones are too tough he said) but after the 3rd try was able to complete the task. I was a bit sore from the process, but able to work all day today and didn't have to take any pain pills for it. Either I'm getting used to this stuff, or the pain will kick in this weekend! I am still feeling great, and looking forward to the transplant. Something new to experience!
I would like to thank everybody for the awesome emails and support over the last 10 days. It was a very trying time for my wife and I. Your support was incredible and greatly appreciated and helped to make a very difficult time more bearable knowing that Jaclyn and my family were in so many peoples thoughts and prayers. Thank you.
7 days left! Then I start the stem cell transplant process. woo hoo? hmmmm, 8-)
One more of my tests is now complete. I survived my bone marrow biopsy and aspiration on late Monday afternoon. woo hoo! I did not have sedation for it, only local anesthetic. The doctor had a bit of trouble removing a sample of bone from my left hip bone marrow, (my bones are too tough he said) but after the 3rd try was able to complete the task. I was a bit sore from the process, but able to work all day today and didn't have to take any pain pills for it. Either I'm getting used to this stuff, or the pain will kick in this weekend! I am still feeling great, and looking forward to the transplant. Something new to experience!
I would like to thank everybody for the awesome emails and support over the last 10 days. It was a very trying time for my wife and I. Your support was incredible and greatly appreciated and helped to make a very difficult time more bearable knowing that Jaclyn and my family were in so many peoples thoughts and prayers. Thank you.
John and Jaclyn status update
Hi all,
Yes, if you watched local channel 2/7 in Calgary yesterday or this morning, that was my daughter Jaclyn on the news. As usual, they did their usual crappy reporting and neglected to mention that she is my daughter, and that myself, Val, and her brother and sisters were all put on tamiflu and quarantined also. The good news, she is doing fine, they have taken her off of the paralytics, and they are trying to wake her up as reported. She is moving a bit now, still unconscious, still on the respirator, and we have been told that she should not backslide anymore! woo hoo! The bad part has been that none of her family has been able to visit her since last Thursday and we won't be able to see her till Saturday. The other good news is that even though my future son-in-law had the h1n1 also, he was treated with the tamiflu and recovered within 2 days. None of the rest of us showed any signs of the h1n1 either, thank goodness. It has been a very difficult last 10 days but the things are looking far, far better than last week!
If you are on facebook, the Pray for Jaclyn Bates group is: http://www.facebook.com/home.php#/group.php?gid=305679335506
Okay, my news. I am doing quite well physically, emotionally, Val and I are still a bit of a basket case, so bear with me the next couple of days. Since I will be going for my stem cell transplant in 12 days (12 days!!!), I am not allowed to see my daughter until she is moved out of the ICU. 8-(
My teeth are slowly healing, most people can't even tell I lost 4 teeth! I will not be in the office until Monday and then it will depend on how many sickies are there. If anyone is sick in the office, I will wind up working from home which will really suck. My brother donor ha passed all of his medical and he will have the stem cells harvested the same day they are put into me. I have the joy of my last chemo at the PLC tomorrow morning and then a bone marrow aspiration late tomorrow afternoon. woo hoo! Just what I need, can't see my daughter, and some pain to look forward to going into the weekend. Maybe I should just slam my hand in a door and get it over with! 8-) Kidding of course, as long as I can open my eyes, I'm a happy guy!
Johnism: Where there is breath, there is hope!
Yes, if you watched local channel 2/7 in Calgary yesterday or this morning, that was my daughter Jaclyn on the news. As usual, they did their usual crappy reporting and neglected to mention that she is my daughter, and that myself, Val, and her brother and sisters were all put on tamiflu and quarantined also. The good news, she is doing fine, they have taken her off of the paralytics, and they are trying to wake her up as reported. She is moving a bit now, still unconscious, still on the respirator, and we have been told that she should not backslide anymore! woo hoo! The bad part has been that none of her family has been able to visit her since last Thursday and we won't be able to see her till Saturday. The other good news is that even though my future son-in-law had the h1n1 also, he was treated with the tamiflu and recovered within 2 days. None of the rest of us showed any signs of the h1n1 either, thank goodness. It has been a very difficult last 10 days but the things are looking far, far better than last week!
If you are on facebook, the Pray for Jaclyn Bates group is: http://www.facebook.com/home.php#/group.php?gid=305679335506
Okay, my news. I am doing quite well physically, emotionally, Val and I are still a bit of a basket case, so bear with me the next couple of days. Since I will be going for my stem cell transplant in 12 days (12 days!!!), I am not allowed to see my daughter until she is moved out of the ICU. 8-(
My teeth are slowly healing, most people can't even tell I lost 4 teeth! I will not be in the office until Monday and then it will depend on how many sickies are there. If anyone is sick in the office, I will wind up working from home which will really suck. My brother donor ha passed all of his medical and he will have the stem cells harvested the same day they are put into me. I have the joy of my last chemo at the PLC tomorrow morning and then a bone marrow aspiration late tomorrow afternoon. woo hoo! Just what I need, can't see my daughter, and some pain to look forward to going into the weekend. Maybe I should just slam my hand in a door and get it over with! 8-) Kidding of course, as long as I can open my eyes, I'm a happy guy!
Johnism: Where there is breath, there is hope!
yah baby!! I survived!! woo hoo! Not only was it a very non-painful
afternoon (just a couple of painful moments), I only lost 4 teeth, and
got 3 temporary fillings! Wow, the dentist and people at TBCC dental
clinic rock! The freezing was out about 2 hours after is was done, but
it's not too bad for pain. Thank goodness for pain killers! Now if I
could just get the last 2 extractions to stop bleeding, I'd be one
happy guy. Ah well, my last cycle of chemo starts in the morning, so
only 4 more treatments at the PLC and I'm done. I'm looking forward to
the next few days as I heal from the dental work.
Next Johnism: Live for the moment, but be prepared for the future! (And have lots of fun doing both!!!)
Next Johnism: Live for the moment, but be prepared for the future! (And have lots of fun doing both!!!)
Well folks, the next big step is here. I get 7, yup 7 teeth yanked
today in 2 hours. I am looking forward to getting it done and start the
healing! As usual, I'll be a bit morbid about it and take a before and
after picture! 8-) Something to scare the kids with next Halloween!!
HA!
I'm feeling great, in good spirits, and expecting things to go swimmingly well.
Wish me luck!
talk to you soon,
John
I'm feeling great, in good spirits, and expecting things to go swimmingly well.
Wish me luck!
talk to you soon,
John
1st day of medical testing for my stem cell transplant now complete!
Well, the testing didn’t go quite as well as I had hoped. I wound up getting my head and chest x-rayed, saw a psychologist, research nurse, dentist, blood work and had an echo cardiogram done on my heart. All in one day. The first of 3 days of testing!! The worst part was the dentist. I had expected at some point to have a couple of teeth extracted, but there is a very, very good possibility of having 7 extracted in the next few days…..
Crap. That made me a bit down the last couple of days, but I now realize that it’s my own damn fault so it's time to suck it up and deal with it! Just another part of the adventure! Yay…..
Only a few more chemo treatments till stem cell day. I still feel great, eating way too much crap, and putting weight on. And boy, does time seem to be flying by. I still have lots to do and arrange for before stem cell day, I'll get it done, but now I feel a need to hurry up and complete it all as as soon as possible. The people at the cancer centre are amazing and incredibly helpful. It has been a very reaffirming experience for me to see that there are so many giving people in the world. And that’s on top of all the fantastic people that I consider my support group! Which is pretty much everybody I know!!
Crap. That made me a bit down the last couple of days, but I now realize that it’s my own damn fault so it's time to suck it up and deal with it! Just another part of the adventure! Yay…..
Only a few more chemo treatments till stem cell day. I still feel great, eating way too much crap, and putting weight on. And boy, does time seem to be flying by. I still have lots to do and arrange for before stem cell day, I'll get it done, but now I feel a need to hurry up and complete it all as as soon as possible. The people at the cancer centre are amazing and incredibly helpful. It has been a very reaffirming experience for me to see that there are so many giving people in the world. And that’s on top of all the fantastic people that I consider my support group! Which is pretty much everybody I know!!
A bit of a sad day today.
I found out that today was the last time I get to see my original oncologist, one of the guys who saved my life last May 15th long weekend. I still have one more cycle of chemo and the next 2 weeks before my stem cell transplant, but it feels like time is moving way to fast! My official last day at the treatment centre will be November 13! Whoo boy, Friday the 13th, lucky day!!
My wife and I were able to say goodbye to the doc and shake hands, but man, to me, that was very lacking. He is on holidays after this week so we well be sending a nice card and BIG baskets to the 2 doctors, and nurses, and admins that have helped me to continue my life and also provide much joy and inspiration to my wife and myself. It was even sadder to let the nurses know that November 13 will be my last chemo treatment with them. ..
Wow, things can certainly change quickly. I saw both my hematologist
and BMT (Bone Marrow Transplant) doctors this last week and received
some interesting news. Apparently, both doctors are expecting my chemo
treatments to stop being effective over the next little while even
though there is no indication of that yet. Stupid cancer. Yow! I'll
worry about it if it happens, not a second before!
Even more interesting, they have found a donor for my Bone Marrow Transplant! Whoo hoo!! My younger brother is a full match and is going through the medical screening now. The date for the transplant has been set for December 2, 2009, but I will be admitted to the hospital for a week of conditioning (chemo every day for 5 days) on November 24, 2009. No idea how long I will be in the hospital, it depends on how my body reacts to the new stem cells. I'm hoping I'll only be in the hospital for about 3-4 weeks and that's what I'm working toward. I thought I had 3 months to get in shape, that's now down to about 6 weeks!! Double yow!!
I am feeling great, very few side effects, and eating better than I've been able to in a long while! And REALLY enjoying seeing everyone at work again!
I am looking forward to this next stage of my little adventure and the new experiences it will bring. While I am in the hospital, I will be working remotely, and updating my blog pages.
Even more interesting, they have found a donor for my Bone Marrow Transplant! Whoo hoo!! My younger brother is a full match and is going through the medical screening now. The date for the transplant has been set for December 2, 2009, but I will be admitted to the hospital for a week of conditioning (chemo every day for 5 days) on November 24, 2009. No idea how long I will be in the hospital, it depends on how my body reacts to the new stem cells. I'm hoping I'll only be in the hospital for about 3-4 weeks and that's what I'm working toward. I thought I had 3 months to get in shape, that's now down to about 6 weeks!! Double yow!!
I am feeling great, very few side effects, and eating better than I've been able to in a long while! And REALLY enjoying seeing everyone at work again!
I am looking forward to this next stage of my little adventure and the new experiences it will bring. While I am in the hospital, I will be working remotely, and updating my blog pages.
Wow, do I ever like my chemo! I am now halfway through the 3rd cycle of
the 3rd type of chemo, and it is working wonders. The doctor has
decided he is going to keep me on this chemo for a while. Best news so
far, the cancer has now disappeared from my blood and has been gone for
about 3 weeks now! My spleen is cooperating nicely by shrinking at a
very nice rate also. The liver is shrinking, but not as fast as the
spleen. Ah well, one thing at a time! I have also gained 20 lbs in the
last 6 weeks. What a difference the Velcade has made for me.
Good news everyone!! Actually, freaking great news!
This new chemo is doing the trick! My appetite is almost back to normal, and my energy level is far greater than it has been in the last 3 months! Also, the doctor has told me that the cancer levels in my blood have dropped considerably, double major WOO HOO! I can also start going back to work a couple of half days a week as long as I don't tire myself out, woo hoo! Whoa! I never thought I'd be saying that about going back to work! 8-)
This new chemo is doing the trick! My appetite is almost back to normal, and my energy level is far greater than it has been in the last 3 months! Also, the doctor has told me that the cancer levels in my blood have dropped considerably, double major WOO HOO! I can also start going back to work a couple of half days a week as long as I don't tire myself out, woo hoo! Whoa! I never thought I'd be saying that about going back to work! 8-)
I had my 5th chemo yesterday and it was changed again. Same thing as with the first type, the cancer was responding, but not as well as the dr wanted to see. So he put me on another new one. Now I get to deal with new side effects, but this chemo is a lot less harsh and only takes an hour! Major wooo hoooo! Bad part is I now have to receive the treatment twice a week for the next couple of weeks to see how it is working. The dr's want to see my spleen and liver back to a normal size before proceeding with a bone marrow transplant.
Let me know if you have any questions.
I am feeling better every day and starting to get my appetite back and put on some more weight, more major woo hoo!
I would like to thank everybody for all the well wishes, good thoughts, and prayers. It makes a huge difference to me and I really appreciate it!
Let me know if you have any questions.
I am feeling better every day and starting to get my appetite back and put on some more weight, more major woo hoo!
I would like to thank everybody for all the well wishes, good thoughts, and prayers. It makes a huge difference to me and I really appreciate it!
Well, I went through the latest chemo on Tuesday. Side effects got a bit worse for the last 2 days, but much, much better now. I'll say it again, stupid chemo side effects! But remember, every day is a good day! Even today!
So they aren't sure now if they can use my blood for the bone marrow transplant. They will decide in about 6 weeks after 2 more big chemo therapies. The great news is that the new chemo is working wonders, no more pain, and organs are rapidly shrinking back to normal size and I am not considered critical. Double woo hoo!
With any luck, the chemo will force this cancer into remission and they can decide with type of bone marrow transplant I can have.
The "bald BBQ" was a great success! The group photo is everyone that had their head shaved that day. My granddaughter is in the picture cuz she wanted to shave her head to, but we told her it wouldn't be a good idea at her age and the risk of being picked on at school. So we let her in the picture instead! I am very proud of my family and all of you for the support in this little journey of mine. I'm the old guy in the middle!
So they aren't sure now if they can use my blood for the bone marrow transplant. They will decide in about 6 weeks after 2 more big chemo therapies. The great news is that the new chemo is working wonders, no more pain, and organs are rapidly shrinking back to normal size and I am not considered critical. Double woo hoo!
With any luck, the chemo will force this cancer into remission and they can decide with type of bone marrow transplant I can have.
The "bald BBQ" was a great success! The group photo is everyone that had their head shaved that day. My granddaughter is in the picture cuz she wanted to shave her head to, but we told her it wouldn't be a good idea at her age and the risk of being picked on at school. So we let her in the picture instead! I am very proud of my family and all of you for the support in this little journey of mine. I'm the old guy in the middle!
I had a few surprises last week with the dr, he decided to change my chemo medication! So far, a bit more nausea, feeling much better, and more flu like symptoms from the chemo, stupid side effects! Thank goodness the side effects only last about a week. He also decided that I will require a bone marrow transplant for sure, and they still think they can use my blood instead of a donor! Woo Hoo! I hope everyone is having a great Stampede and have a couple of beverages for me to!
I went to the hospital today for a checkup and blood work and got fantastic news. My blood counts are almost back to normal! I still have the cancer, but boy, do I ever feel better. So good in fact, that my next visit/chemo will be on June 9th and they are looking at a much more aggressive chemo treatment for me! They still haven't said how many more treatments I may need, but I expect to find out more about that on the 9th. I still have the fatigue and the lack of immunity so I will still be house bound for a while and working from home.
May 15 - May 18: I will just give the highlights of these last couple of days. If you would like the nitty gritty, let me know.
Here it goes: I received a call Friday morning at 11:00 am and was told to go the emergency at local hospital for a blood transfusion and to meet the blood specialist there. He looked at the blood test results and the ultrasound from a month ago, and then the results from Thursday. Here is what happened:
Friday: bone marrow biopsy done in the afternoon. 2 samples taken, didn't quite work out, so he wants to do a lymph node biopsy also. Told I have a Lymphoma cancer, but they don't know what type yet. I also get about 4 blood samples taken, and given 2 units of blood. They had a bed waiting for me and I could not believe this was all happening so fast. Saw the surgeon that night about which lymph node they will remove.
Saturday: I have a chest x-ray taken to see if I have any lymph nodes in my chest, if I do, I can't have a general anesthetic for the surgery. Turns out I didn't have any so that was good news. Surgery was done about an hour later, using a local. Felt no pain at all, and actually fell asleep halfway through it. Specialist doc comes in later and tells me that from the blood work I have 99% chance that the cancer is lymphoma mantel cancer. It is a very aggressive cancer and he will book me for chemo on Sunday.
Sunday: I received 3 types of chemo, 2 iv's going at once, 1 unit of blood before the chemo, 1 unit afterward. It was a very busy day. Doc says I should be able to go home by Tuesday. (wow!)
Monday: No serious side effects, doc comes in and kicks me out today! Double whoo hoo! I am now at home and feeling okay. Downside is, I may not be a work for awhile to a lack of immune system from the chemo, and no blood clotting from the cancer.
Conclusion: I will live (yay!!), it may take a while for to get back to normal, but I'm told that I have a 97% chance of recovery and the chemo should aggressively attack it. I cannot be near anybody with any type of sniffles, cold, flu and anything of that nature or it can kill me.
Lymphoma Mantel Cancer facts: Rare cancer (of course, only in my case), not passed down by heredity. They are not sure what causes it, only that it could be from some toxin in my past. And also that my ginkgo biloba may have made me much more susceptible to it. I sure didn't see that when I researched ginkgo a number of years ago, so be careful with it if you use it. So I am not allowed any herbal medication or vitamins while doing chemo. They do not know how long I will be doing chemo, could be a few months, could be 6 months.
Here it goes: I received a call Friday morning at 11:00 am and was told to go the emergency at local hospital for a blood transfusion and to meet the blood specialist there. He looked at the blood test results and the ultrasound from a month ago, and then the results from Thursday. Here is what happened:
Friday: bone marrow biopsy done in the afternoon. 2 samples taken, didn't quite work out, so he wants to do a lymph node biopsy also. Told I have a Lymphoma cancer, but they don't know what type yet. I also get about 4 blood samples taken, and given 2 units of blood. They had a bed waiting for me and I could not believe this was all happening so fast. Saw the surgeon that night about which lymph node they will remove.
Saturday: I have a chest x-ray taken to see if I have any lymph nodes in my chest, if I do, I can't have a general anesthetic for the surgery. Turns out I didn't have any so that was good news. Surgery was done about an hour later, using a local. Felt no pain at all, and actually fell asleep halfway through it. Specialist doc comes in later and tells me that from the blood work I have 99% chance that the cancer is lymphoma mantel cancer. It is a very aggressive cancer and he will book me for chemo on Sunday.
Sunday: I received 3 types of chemo, 2 iv's going at once, 1 unit of blood before the chemo, 1 unit afterward. It was a very busy day. Doc says I should be able to go home by Tuesday. (wow!)
Monday: No serious side effects, doc comes in and kicks me out today! Double whoo hoo! I am now at home and feeling okay. Downside is, I may not be a work for awhile to a lack of immune system from the chemo, and no blood clotting from the cancer.
Conclusion: I will live (yay!!), it may take a while for to get back to normal, but I'm told that I have a 97% chance of recovery and the chemo should aggressively attack it. I cannot be near anybody with any type of sniffles, cold, flu and anything of that nature or it can kill me.
Lymphoma Mantel Cancer facts: Rare cancer (of course, only in my case), not passed down by heredity. They are not sure what causes it, only that it could be from some toxin in my past. And also that my ginkgo biloba may have made me much more susceptible to it. I sure didn't see that when I researched ginkgo a number of years ago, so be careful with it if you use it. So I am not allowed any herbal medication or vitamins while doing chemo. They do not know how long I will be doing chemo, could be a few months, could be 6 months.
I see the new doctor, he schedules me for blood tests this afternoon. He tells me that I have cancer for sure, and that as soon as he gets the test results, he will call me. He also tells me I should make sure all my papers are in order.
The useless doc calls and tells me I have an appointment with a blood specialist on May 22. I am not going to wait till then. I am going to see the new doc this week. Boy, am I glad I did!
April 30 - May 11: I am still quite fatigued but still able to mostly work. I have been to the useless doc at least twice, he has not had any response back from the specialist, and he has not followed up with a phone call to him. By May 11, I am fed up with him and I go to see him and ask him for an update. No phone call to the specialist, again. He is going to call him, finally, if he doesn't hear back from him about the now urgent fax. I ask for and get a copy of my test results from him and tell him I am getting a second opinion.
I didn’t hear anything from the useless doc, so my wife and I went to see him. He thought his office had phoned us to come in, we told him no, we hadn't heard anything and want to know what is going on. He tells me that there is a strong possibility of cancer, 1 of 2 types but he can't tell us which. I ask him for a prognosis, and he won't give me one. He says he'll fax the results to a blood specialist and he'll let me know when I get an appointment. He will not tell us the specialist name or give us his number.
Ultrasound was done. It took 2.5 hours. This is the first real indication that something is quite serious, I have an enlarged spleen and massively enlarged liver. They tried calling the useless doc but they weren't picking up the phone so they faxed the results to him within an hour.