Monday, April 26, 2010
First chemo...April 23
Saturday April 24/10
Friday was a long day, but I have to admit not overly traumatic. Early morning started out with a quick surgery to insert a portacath. All the nurses and doctors were wonderful in keeping me calm (and heavily medicated) since I was so nervous. I was done this around 10 am and not scheduled for chemo until 2pm, so I came home for a short nap.
At 2pm we returned to the hospital for my first round of chemo. The nurses there are all super nice. The chemo took about 4 hours, not too bad. During that time I was able to speak to nurses, a pharmacist and my liaison nurse. I had alot of questions answered. I`ve been given alot of great medications to help ease the side effects of the chemo, mainly for the nausea. It`s not even 24 hours yet from the chemo, but so far so good. I've been keeping on a strict schedule taking my anti-emetics and some anxiety meds that help me sleep...so I have been doing allot of sleeping - something that i haven`t done in a long time.
Brad has taken the girls out to Carelton Place to Nanny and Grampa till Sunday morning so that i may enjoy a quite house, especially not knowing how things are going to go. I spoke with them this morning and it seems the girls are happy and doing well. Olivia was headed to the Perth Maple Fest with daddy and Alexia was hanging out with Nanny and Grampa.
My understand of `the plan`` as it stands now (it could change) is that we will do another cycle of this ABVD on May7th. A few weeks later we will take scans to see how the tumor has responded to the chemo. hopes are we will see significant shrinking. If that is the case we will go right into stem cell collection, a process which takes about a day and is done outpatient. The catch...Because i have already has a stem cell transplant (and collection), they anticipate that collection this time around will be very difficult doing it the usual way. They have applied to a drug company for a drug that stimulate the generation of the stem cells in the hopes that we can get a successfull collection. Once the application is approved by the drug company then we have to apply to the federal government to ask approval to use for my case here in Canada and it is not yet approved. All of this is handled by the liaison nurse and she says it won;t be a problem to access the drug and that we should be able to collect stem cells this way (fingers crossed).
After this there will be a consult with the radiologist to see if radiation will be an option - it may or may not be. My understanding at this point is that i will undergo another autologues Stem Cell transplant. This will be the most difficult on everyone. it will be very difficult emotionally and physically especially on me, but for sure our families and my children as well.
We continue to need everyone help and support, happy thoughts and prayers as well. We really appreciate everything that everyone has done for us so far...the emails, the messages, the phone calls, the food and treats sent over, the cards, the prayers, help caring for the girls, the help cleaning our house...just everything is a big help! So Thank you.
Will update more as things progress the next week. Love to all, from the O`Neil`s xoxo
Friday was a long day, but I have to admit not overly traumatic. Early morning started out with a quick surgery to insert a portacath. All the nurses and doctors were wonderful in keeping me calm (and heavily medicated) since I was so nervous. I was done this around 10 am and not scheduled for chemo until 2pm, so I came home for a short nap.
At 2pm we returned to the hospital for my first round of chemo. The nurses there are all super nice. The chemo took about 4 hours, not too bad. During that time I was able to speak to nurses, a pharmacist and my liaison nurse. I had alot of questions answered. I`ve been given alot of great medications to help ease the side effects of the chemo, mainly for the nausea. It`s not even 24 hours yet from the chemo, but so far so good. I've been keeping on a strict schedule taking my anti-emetics and some anxiety meds that help me sleep...so I have been doing allot of sleeping - something that i haven`t done in a long time.
Brad has taken the girls out to Carelton Place to Nanny and Grampa till Sunday morning so that i may enjoy a quite house, especially not knowing how things are going to go. I spoke with them this morning and it seems the girls are happy and doing well. Olivia was headed to the Perth Maple Fest with daddy and Alexia was hanging out with Nanny and Grampa.
My understand of `the plan`` as it stands now (it could change) is that we will do another cycle of this ABVD on May7th. A few weeks later we will take scans to see how the tumor has responded to the chemo. hopes are we will see significant shrinking. If that is the case we will go right into stem cell collection, a process which takes about a day and is done outpatient. The catch...Because i have already has a stem cell transplant (and collection), they anticipate that collection this time around will be very difficult doing it the usual way. They have applied to a drug company for a drug that stimulate the generation of the stem cells in the hopes that we can get a successfull collection. Once the application is approved by the drug company then we have to apply to the federal government to ask approval to use for my case here in Canada and it is not yet approved. All of this is handled by the liaison nurse and she says it won;t be a problem to access the drug and that we should be able to collect stem cells this way (fingers crossed).
After this there will be a consult with the radiologist to see if radiation will be an option - it may or may not be. My understanding at this point is that i will undergo another autologues Stem Cell transplant. This will be the most difficult on everyone. it will be very difficult emotionally and physically especially on me, but for sure our families and my children as well.
We continue to need everyone help and support, happy thoughts and prayers as well. We really appreciate everything that everyone has done for us so far...the emails, the messages, the phone calls, the food and treats sent over, the cards, the prayers, help caring for the girls, the help cleaning our house...just everything is a big help! So Thank you.
Will update more as things progress the next week. Love to all, from the O`Neil`s xoxo
Thursday, April 22, 2010
Some April Pics....
Olivia helps Daddy again this year sweep up the gravel from the street...
...while Alexia has a big nap....
...fashionista in the making...
Nanny and Grampa with all there grand kids...plus a couple extras...
...this is a fun activity!
The 3 musketeer's after the Easter egg hunt at aunt Kathy and Uncle Earls...
...taking the hunt very serious!
Alexia chillin' with cousin Alison...
Olivia and Nanny:
Easter Party at the Papineau's...Olivia and sheshe check out the loot Post Easter egg hunt!
The festivities wore Alexia out!
A day at the experimental farm...Mommy and her big girl!
...and her little girl!
The kids enjoying our neighbourhood park with grandma and pops!
Alexia and her friend Lena enjoy a play date...
Alexia and friend Maguire enjoy time outside on their play date...
Gibson and Olivia make cool cupcakes!
...while Alexia has a big nap....
...fashionista in the making...
Nanny and Grampa with all there grand kids...plus a couple extras...
...this is a fun activity!
The 3 musketeer's after the Easter egg hunt at aunt Kathy and Uncle Earls...
...taking the hunt very serious!
Alexia chillin' with cousin Alison...
Olivia and Nanny:
Easter Party at the Papineau's...Olivia and sheshe check out the loot Post Easter egg hunt!
The festivities wore Alexia out!
A day at the experimental farm...Mommy and her big girl!
...and her little girl!
The kids enjoying our neighbourhood park with grandma and pops!
Alexia and her friend Lena enjoy a play date...
Alexia and friend Maguire enjoy time outside on their play date...
Gibson and Olivia make cool cupcakes!
Friday, April 16, 2010
I HATE Cancer
We try to discourage certain words and phrases from our children. Right now in particular for Olivia. Her vocabulary has exploded in the last while and rapidly expands daily. So to that list we add the word hate. Yet it is the only word appropriate in describing how I feel about cancer at the moment.
I have always tried to keep the blog a happy place, but it is our best way to keep family and friends up to date, so I guess from time to time it may not always be that happy place....
I have been battling Cancer (Hodgkin's Lymphoma) now for over 15 years. How unfair, I`m only 34. My first diagnosis was at 18. By the time of diagnosis I was very very ill (stage IVB, the last stage). The outcome would be uncertain, but I chose even in total weakness to give it my all. I went through 8 months of of a chemotherapy regimen called ABVD. At the end of it routine tests and scans showed that I had responded well the the chemotherapy treatment and that I was for the time being, in remission and no further treatment was going to be necessary.
Three years later at a routine annual check up I reported that I felt ``well`` but i had a dry cough that I just couldn't`t kick. An immediate chest x-ray showed that I had relapsed. I of course felt devastated, but felt i had to fight and would do whatever it took to kick this again, and this time for good. It was decided the best chance of that was going to be an autologous stem cell transplant which would include more chemo, collection of my stem cells to use again later, more chemo (extreme high dose) and then the Stem cell transplant where my cells would be returned to me. This was a long process (6 months) and incredibly intense. Many days in the hospital and in isolation for a period of time. In the end, scans showed again I had responded well to the treatment and again I was in remission. This was in 1999.
Here we are, nearly 11 years later. I had finally let my guard down some years ago and told myself there was no way this cancer would come back after all this time. Since that time I finished college, moved to a new city, started my job, met a wonderful man who I married and had two children (both miracles considering that during previous treatments i was told it would be unlikely i`d conceive in the future). I couldn't`t ask for anything more to make my life complete.
After the birth of Alexia this past November I was due for annual scans and check ups. I called and made an appointment to be seen and now had an appointment for the end of January. I made a list of concerns I had as I was feeling completely run down and over all just not myself. I couldn't`t differentiate if it was just new mom stuff plus the fact I have a toddler or if it were something more. I`d let the scans decide. I was sent for scans and x-rays right away after listing my concerns. I received a call the next day to come into the clinic immediately to discuss the results. This was at the end of January and from that day, life again has changed forever. The scans showed definite change (growth) since the last and suggest another relapse of the Hodgkin's lymphoma (it`s important to note that relapses this late are very uncommon). I was devastated, more so than ever before, since now the stakes seem so much higher. It`s not just me I have to fight for...now the fight is for those around me, in particular my husband (he`s too young to be a widow) and my two children (too young to be without their mother).
So, why have I not talked or blogged about all this till now...Because I was hoping for a miracle. I`ve been through a battery of tests, biopsies and surgeries...purpose, to gather more information if possible. After alot of waiting ( i hate waiting) not one of my biopsies have been very help full and they samples taken were inconclusive. I was hoping this would all be a big mistake, but it isn`t and now it`s time to move forward with a plan.
My concerns now are that this is a second relapse which according to one of my doctors, makes the possibility of a cure unlikely. This comment made me even more devastated. Maybe it was just poor bedside manner or maybe it was him being realistic. The doctor I was seen by more recently (also the head of the hematology department and in my opinion a brilliant man) in a nutshell told me that we would not approach this half assed and that yes, we would still aim for a cure. Ok, those were not his exact words, ie half assed...i`m paraphrasing, but i like his approach better.
It`s taken nearly 3 months to get to this point. We now have a plan - sort of. I will fight again and the hopes are at the very least for another very long remission or with any luck a cure this time.
I will be starting chemo next Friday on the 23rd of April. The drugs they are using I have had in the past. I will go through 3 rounds (approximately) which will be one day every 2 weeks taking about 3 months. This is in hopes that I respond well to the chemo and the tumor shrinks significantly. This will be determined my scans and x-rays. At that time the next part of the plan will be made depending on where things are at and how the tumor has responded. Possibilities will include more chemo (maybe the same drugs, maybe different ones), maybe radiation, maybe another stem cell transplant, maybe all of the above. If all goes well, with no complications along the way and a good response, we`re looking at about a 6 month window to complete treatment.
What I depended on previously to get through all this was my own personal strength and determination as well as the strength and help from those around me...family and friends. I feel so lucky that I had all that. Not much has changed...just that i have more family and friends....
Now more than ever I will depend on my own strength and determination...as well as that of my husband, family and friends. And now i`m lucky enough to have Brad`s family behind me too.
Although I know I need to think of me, my biggest concern are my two girls. I want to get through all of this without it affecting them negatively. Frankly, I worry less about Alexia...she is so little and likely will not remember a single thing. Olivia is a different story, she is so young but so bright. She doesn`t miss a thing and is very sensitive. We haven`t gotten into the nitty gritty yet and already she is so aware of more than she needs to be. We will do our best to keep explanations on her level.
I feel lucky in that we have had so many people offer help already. WE are going to need it so I appreciate the offers and we`ll do our best to actually come out and ask for it (sometimes that is difficult as brad and I both hate imposing on others).So, this is where we`re at for now on this front. I wish the news was better. I will continue to update the blog as much as i can with pictures and stories of the girls and as well we`ll keep everyone up to date on what`s happening through the treatment process etc.
I know I`ve nutshelled info in this blog so please if anyone has specific questions - just ask. :)
I have always tried to keep the blog a happy place, but it is our best way to keep family and friends up to date, so I guess from time to time it may not always be that happy place....
I have been battling Cancer (Hodgkin's Lymphoma) now for over 15 years. How unfair, I`m only 34. My first diagnosis was at 18. By the time of diagnosis I was very very ill (stage IVB, the last stage). The outcome would be uncertain, but I chose even in total weakness to give it my all. I went through 8 months of of a chemotherapy regimen called ABVD. At the end of it routine tests and scans showed that I had responded well the the chemotherapy treatment and that I was for the time being, in remission and no further treatment was going to be necessary.
Three years later at a routine annual check up I reported that I felt ``well`` but i had a dry cough that I just couldn't`t kick. An immediate chest x-ray showed that I had relapsed. I of course felt devastated, but felt i had to fight and would do whatever it took to kick this again, and this time for good. It was decided the best chance of that was going to be an autologous stem cell transplant which would include more chemo, collection of my stem cells to use again later, more chemo (extreme high dose) and then the Stem cell transplant where my cells would be returned to me. This was a long process (6 months) and incredibly intense. Many days in the hospital and in isolation for a period of time. In the end, scans showed again I had responded well to the treatment and again I was in remission. This was in 1999.
Here we are, nearly 11 years later. I had finally let my guard down some years ago and told myself there was no way this cancer would come back after all this time. Since that time I finished college, moved to a new city, started my job, met a wonderful man who I married and had two children (both miracles considering that during previous treatments i was told it would be unlikely i`d conceive in the future). I couldn't`t ask for anything more to make my life complete.
After the birth of Alexia this past November I was due for annual scans and check ups. I called and made an appointment to be seen and now had an appointment for the end of January. I made a list of concerns I had as I was feeling completely run down and over all just not myself. I couldn't`t differentiate if it was just new mom stuff plus the fact I have a toddler or if it were something more. I`d let the scans decide. I was sent for scans and x-rays right away after listing my concerns. I received a call the next day to come into the clinic immediately to discuss the results. This was at the end of January and from that day, life again has changed forever. The scans showed definite change (growth) since the last and suggest another relapse of the Hodgkin's lymphoma (it`s important to note that relapses this late are very uncommon). I was devastated, more so than ever before, since now the stakes seem so much higher. It`s not just me I have to fight for...now the fight is for those around me, in particular my husband (he`s too young to be a widow) and my two children (too young to be without their mother).
So, why have I not talked or blogged about all this till now...Because I was hoping for a miracle. I`ve been through a battery of tests, biopsies and surgeries...purpose, to gather more information if possible. After alot of waiting ( i hate waiting) not one of my biopsies have been very help full and they samples taken were inconclusive. I was hoping this would all be a big mistake, but it isn`t and now it`s time to move forward with a plan.
My concerns now are that this is a second relapse which according to one of my doctors, makes the possibility of a cure unlikely. This comment made me even more devastated. Maybe it was just poor bedside manner or maybe it was him being realistic. The doctor I was seen by more recently (also the head of the hematology department and in my opinion a brilliant man) in a nutshell told me that we would not approach this half assed and that yes, we would still aim for a cure. Ok, those were not his exact words, ie half assed...i`m paraphrasing, but i like his approach better.
It`s taken nearly 3 months to get to this point. We now have a plan - sort of. I will fight again and the hopes are at the very least for another very long remission or with any luck a cure this time.
I will be starting chemo next Friday on the 23rd of April. The drugs they are using I have had in the past. I will go through 3 rounds (approximately) which will be one day every 2 weeks taking about 3 months. This is in hopes that I respond well to the chemo and the tumor shrinks significantly. This will be determined my scans and x-rays. At that time the next part of the plan will be made depending on where things are at and how the tumor has responded. Possibilities will include more chemo (maybe the same drugs, maybe different ones), maybe radiation, maybe another stem cell transplant, maybe all of the above. If all goes well, with no complications along the way and a good response, we`re looking at about a 6 month window to complete treatment.
What I depended on previously to get through all this was my own personal strength and determination as well as the strength and help from those around me...family and friends. I feel so lucky that I had all that. Not much has changed...just that i have more family and friends....
Now more than ever I will depend on my own strength and determination...as well as that of my husband, family and friends. And now i`m lucky enough to have Brad`s family behind me too.
Although I know I need to think of me, my biggest concern are my two girls. I want to get through all of this without it affecting them negatively. Frankly, I worry less about Alexia...she is so little and likely will not remember a single thing. Olivia is a different story, she is so young but so bright. She doesn`t miss a thing and is very sensitive. We haven`t gotten into the nitty gritty yet and already she is so aware of more than she needs to be. We will do our best to keep explanations on her level.
I feel lucky in that we have had so many people offer help already. WE are going to need it so I appreciate the offers and we`ll do our best to actually come out and ask for it (sometimes that is difficult as brad and I both hate imposing on others).So, this is where we`re at for now on this front. I wish the news was better. I will continue to update the blog as much as i can with pictures and stories of the girls and as well we`ll keep everyone up to date on what`s happening through the treatment process etc.
I know I`ve nutshelled info in this blog so please if anyone has specific questions - just ask. :)
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