I'd like to give a warm welcome Alison and Steve who have been readers here for a few days now looking for inspiration. I'm not sure I'm a pillar of inspiration, but I appeciate the thought behind it. Like me, They have been married four years this month, and are battling Leukemia. They live in Cape Town, South Africa. Alison has commented a few times in the previous post. This is more of a follow-up to that.
I've had 6-7 lumbar puctures with the methatrexate chemo. Not fun at all, but not as bad as the bone marrow biopsies. Forunately, all my puctures have came back clear.
At times it's been very hard to be positive about all this. It's tough to wake up and go 'how crappy am I going to feel today?' But, you do have good days and bad and they give you strength to look for more good days. A friend of mine who went through a similar experience keeps telling me to cheer up and that this experience will make you appreciate life more than the average person. And that's not something you can just 'give' someone.' They have to go through it.
If you're having trouble posting here, feel free to email me at jrose2@nd.edu.
I hope you guys have a good day today.
~Jonathon
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Sunday, March 29, 2009
Day 66: Making Contact
I'd like to give a warm welcome Alison and Steve who have been readers here for a few days now looking for inspiration. I'm not sure I'm a pillar of inspiration, but I appeciate the thought behind it. Like me, They have been married four years this month, and are battling Leukemia. They live in Cape Town, South Africa. Alison has commented a few times in the previous post. This is more of a follow-up to that.
I've had 6-7 lumbar puctures with the methatrexate chemo. Not fun at all, but not as bad as the bone marrow biopsies. Forunately, all my puctures have came back clear.
At times it's been very hard to be positive about all this. It's tough to wake up and go 'how crappy am I going to feel today?' But, you do have good days and bad and they give you strength to look for more good days. A friend of mine who went through a similar experience keeps telling me to cheer up and that this experience will make you appreciate life more than the average person. And that's not something you can just 'give' someone.' They have to go through it.
If you're having trouble posting here, feel free to email me at jrose2@nd.edu.
I hope you guys have a good day today.
~Jonathon
I've had 6-7 lumbar puctures with the methatrexate chemo. Not fun at all, but not as bad as the bone marrow biopsies. Forunately, all my puctures have came back clear.
At times it's been very hard to be positive about all this. It's tough to wake up and go 'how crappy am I going to feel today?' But, you do have good days and bad and they give you strength to look for more good days. A friend of mine who went through a similar experience keeps telling me to cheer up and that this experience will make you appreciate life more than the average person. And that's not something you can just 'give' someone.' They have to go through it.
If you're having trouble posting here, feel free to email me at jrose2@nd.edu.
I hope you guys have a good day today.
~Jonathon
6 comments:
Like I posted before, we will do our best to help out you new found friends in South Africa! I hope that they will feel the support and love that you do from your blog. As you know, so many ready this and don't comment. So they will have that much added prayers and thoughts coming their way!
ReplyDelete
AnonymousMarch 30, 2009 at 2:20 AMThanks for taking the time to respond to my messages, this has been the best 'medicine' so far! Steven & I have been reading your day to day entries and it has helped us more than you will know.
ReplyDelete
We had a good weekend, not phoning the dr on friday was definately a good decision, as we didnt spend the weekend thinking about the next 'procedure/treatment' that would face steven today.......i suppose you call this 'denial behaviour'! Although he ran out of his happy pills last night, so we have to make contact with dr today, otherwise he doesnt cope emotionally. (the tablet is similar to ativan, it calms you down) You should see what my kitchen counter tops look like....a pharmacy.....where there used to be food, there is now tablets and potions for every ailment that leukaemia brings upon a person.
We also find many people tell us to cheer up....ummmm, not possible most times, we've had 5 weeks of bad news...this is not a cheerful time!! But yes, i know one has to stay positive and live each day to the full, we are trying to do that.
It is 8am here, steven has gone off to work, & i must now follow. He runs his own business, so we have to just keep going...no work...no pay!
and to prima donna, you seem like a star, great that you post comments. We have a facebook site for steven called 'steven cresswell, i will overcome this', which a friend of ours started up for him. It has been easier for me to do updates that way, than to individually send messages...i just dont have the time. but i have also found that initially you get lots of comments of support, but it seems to fizzle out with time.
i look forward to reading your next post,
love alisonit is so great that your posts have helped others. i hope this is a good week for you both. just want you to know we are thinking of you and hope today is a good day.
ReplyDelete
love
dad and cherylAlison,
ReplyDelete
Thanks for nice compliment, but it is you and your husband, Jonathon and Katie who are the stars! I tried to get to your husbands page, but wasn't able to. I would love to read your posts! I can only imagine how hard it is to stay positive, and I have also seen it with Jonathon. There is no way that I can truly feel what any of you do, but I can only offer support. Try to remember that once Steven and Jonathon receive their transplants, then your lives will return to normal. Hard to see at this time, I am sure! But, try not to let yourselves become to consumed. Easy for me to say, right?! There are going to be good days and bad days, but just think....there are so many people in the world who would give anything to be in your places right now. You have support and love and great doctors and hope. They may have nothing. You have a cure in sight, they may have something that will be with them for a life time. Wow, that all sounds very heavy!! Just hug each other every day and remember that even with this cancer, life is good! I love Jonathon and Katie very much, and I am sure that through this blog, we will all get to know and love you and your husband, Steven. Have a great day!!
Jonathon and Katie - just wanted to check in on you two. From our brief meeting together, I know that you have the strength and courage to make it through these tough times. You both remain in my prayers. God Bless.
ReplyDelete- AnonymousApril 1, 2009 at 2:04 AM
Hi again, how u doing with your chemo regimen, still feeling okay or having a bad week?
ReplyDelete
Steven got admitted yesterday to the bonemarrow transplant unit, but only for the purpose of keeping him isolated. We were both a bit shocked initially as we had arrived thinking he would be going to the sunflower ward for his chemo, where it is more relaxed and you can socialise with other patients. Now he is separated from everyone and is only allowed a few visits per day, strict diet, plenty handwashing and when i visit, I have to get changed into theatre garb and booties before going into the ward.
We both had a bit of a breakdown as we werent prepared for all that, but are feeling okay about it now. He is getting high doses of methotrexate, and also vincristine. the methotrexate will run non stop for 24 hrs. sometime today or tomorrow he will have a lumbar puncture and then intrathecal methotrexate......thanks to you, i asked the dr about it last night, and he said 'yes, i was just about to let you know about that prodcedure'....am glad i was prepared for it!
The nursing staff say that the worst side effect of the methotrexate is the mouth ulcers, is that how you experienced it? Did you have nausea?
I did send you an email a few days ago, with some photos attached, did you receive it?
Bye for now, alison
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Like I posted before, we will do our best to help out you new found friends in South Africa! I hope that they will feel the support and love that you do from your blog. As you know, so many ready this and don't comment. So they will have that much added prayers and thoughts coming their way!
ReplyDeleteThanks for taking the time to respond to my messages, this has been the best 'medicine' so far! Steven & I have been reading your day to day entries and it has helped us more than you will know.
ReplyDeleteWe had a good weekend, not phoning the dr on friday was definately a good decision, as we didnt spend the weekend thinking about the next 'procedure/treatment' that would face steven today.......i suppose you call this 'denial behaviour'! Although he ran out of his happy pills last night, so we have to make contact with dr today, otherwise he doesnt cope emotionally. (the tablet is similar to ativan, it calms you down) You should see what my kitchen counter tops look like....a pharmacy.....where there used to be food, there is now tablets and potions for every ailment that leukaemia brings upon a person.
We also find many people tell us to cheer up....ummmm, not possible most times, we've had 5 weeks of bad news...this is not a cheerful time!! But yes, i know one has to stay positive and live each day to the full, we are trying to do that.
It is 8am here, steven has gone off to work, & i must now follow. He runs his own business, so we have to just keep going...no work...no pay!
and to prima donna, you seem like a star, great that you post comments. We have a facebook site for steven called 'steven cresswell, i will overcome this', which a friend of ours started up for him. It has been easier for me to do updates that way, than to individually send messages...i just dont have the time. but i have also found that initially you get lots of comments of support, but it seems to fizzle out with time.
i look forward to reading your next post,
love alison
it is so great that your posts have helped others. i hope this is a good week for you both. just want you to know we are thinking of you and hope today is a good day.
ReplyDeletelove
dad and cheryl
Alison,
ReplyDeleteThanks for nice compliment, but it is you and your husband, Jonathon and Katie who are the stars! I tried to get to your husbands page, but wasn't able to. I would love to read your posts! I can only imagine how hard it is to stay positive, and I have also seen it with Jonathon. There is no way that I can truly feel what any of you do, but I can only offer support. Try to remember that once Steven and Jonathon receive their transplants, then your lives will return to normal. Hard to see at this time, I am sure! But, try not to let yourselves become to consumed. Easy for me to say, right?! There are going to be good days and bad days, but just think....there are so many people in the world who would give anything to be in your places right now. You have support and love and great doctors and hope. They may have nothing. You have a cure in sight, they may have something that will be with them for a life time. Wow, that all sounds very heavy!! Just hug each other every day and remember that even with this cancer, life is good! I love Jonathon and Katie very much, and I am sure that through this blog, we will all get to know and love you and your husband, Steven. Have a great day!!
Jonathon and Katie - just wanted to check in on you two. From our brief meeting together, I know that you have the strength and courage to make it through these tough times. You both remain in my prayers. God Bless.
ReplyDeleteHi again, how u doing with your chemo regimen, still feeling okay or having a bad week?
ReplyDeleteSteven got admitted yesterday to the bonemarrow transplant unit, but only for the purpose of keeping him isolated. We were both a bit shocked initially as we had arrived thinking he would be going to the sunflower ward for his chemo, where it is more relaxed and you can socialise with other patients. Now he is separated from everyone and is only allowed a few visits per day, strict diet, plenty handwashing and when i visit, I have to get changed into theatre garb and booties before going into the ward.
We both had a bit of a breakdown as we werent prepared for all that, but are feeling okay about it now. He is getting high doses of methotrexate, and also vincristine. the methotrexate will run non stop for 24 hrs. sometime today or tomorrow he will have a lumbar puncture and then intrathecal methotrexate......thanks to you, i asked the dr about it last night, and he said 'yes, i was just about to let you know about that prodcedure'....am glad i was prepared for it!
The nursing staff say that the worst side effect of the methotrexate is the mouth ulcers, is that how you experienced it? Did you have nausea?
I did send you an email a few days ago, with some photos attached, did you receive it?
Bye for now, alison