Sorry, I totally forgot to post the results of the visit to my surgeon on Tuesday. I guess it was the chemo brain acting up again.
Going into the appointment the one thing I knew for sure was that I did not want to have any lymph nodes removed. The primary tumour is on the left side and I am dominantly left handed and I am a klutz so I figure I am pretty much the potential poster child for lymphedema. And then my surgeon said "due to your age and how well you responded to treatment......we should definitely remove all the lymph nodes".
Of course she said that. I had made a plan so now it is being changed. What a surprise:P
The general opinion appears to be that even though technically I am not curable, due to my age and how well I responded to treatment, everyone is just pretending I am curable and treating me in the most aggressive manner possible.
Can't really disagree with that idea.
So......on February 6th I get to trot off to Mount Saint Joes and have my left breast lopped off and all the lymph nodes removed. Sounds like a fabulous way to spend a few hours, doesn't it?
I get to stay overnight in the hospital though. Yes, you heard me correctly, one whole night.
Then Ian gets to take 2 weeks off work to look after me since I will have limited use of my left arm and I will be kicked out of the hospital before I have even started to heal.
At least Ian has lots of vacation time left. I can't imagine what people do if they either don't have a spouse or their spouse can't take time off.
Oh, and on Wednesday I had another bone scan as a baseline for following my progress now that chemo is done for now.
And the Siemens sensors behaved very well so I did not squashed;-)
Tomorrow it is CT scan day to finish up my baseline testing.
Thursday 24 January 2013
Monday 21 January 2013
Next Treatment Step.......New Shoes
I swear, Ian encourages me to buy them. It's not my fault.
Here they are:
The highlight of my shopping trip was when I was called a True Fluevogger!!!!! And by someone working at the store too.
There is a pair of boots in the same family I would love to buy as well......maybe after the next step is adventure.
And the lobster dinner last week was fabulous! It is my favourite meal.
Tomorrow it is off to see the wizard, or at least my surgeon.
Here they are:
There is a pair of boots in the same family I would love to buy as well......maybe after the next step is adventure.
And the lobster dinner last week was fabulous! It is my favourite meal.
Tomorrow it is off to see the wizard, or at least my surgeon.
Wednesday 16 January 2013
My PET Scan Results
I had a PET scan yesterday. It was really short notice so I don't know if many people had heard about it.
I had my oncologist appointment today. Going into the appointment I had the next few months of my life all mapped out. I had decided that I am done with chemo for now. I am ready to have my hair back (especially those nose hairs) and to have an end to most of those pesky side effects.
I had also decided no surgery for now. I can tell that my brain is slowly starting to emerge from the chemo fog and I am so ready to go back to work. I will have radiation. That would help control any primary tumour left and zap any cells left in my lymph nodes or in the patch of skin.
At the oncology appointment the results of my PET scan were the first order of business. The official word is ALL bone and liver mets that lit up on the original scan are no longer visible!!!!!!!!
There is only residual activity remaining in the primary tumour.
So........next step..........surgery. There go my plans.
But, who cares????? That is pretty much the best news I could possibly get. As a stage IV patient I have been ingrained by others who have gone before me that the primary goal is for the mets to be stable. As long as things don't get bigger, you are good. To have all the mets melted away, that is absolutely fantastic!!
And to top it off I get to have a lobster dinner to celebrate.
Next up will be the meeting with the surgeon on Tuesday morning.
I had been expecting a certain level of good news with the PET scan results but this is just so fabulous I almost can't believe it.
Thanks to everyone for all the thoughts and prayers and company while I have travelled this first step of my journey. I couldn't have got to this point without you:-)
I had my oncologist appointment today. Going into the appointment I had the next few months of my life all mapped out. I had decided that I am done with chemo for now. I am ready to have my hair back (especially those nose hairs) and to have an end to most of those pesky side effects.
I had also decided no surgery for now. I can tell that my brain is slowly starting to emerge from the chemo fog and I am so ready to go back to work. I will have radiation. That would help control any primary tumour left and zap any cells left in my lymph nodes or in the patch of skin.
At the oncology appointment the results of my PET scan were the first order of business. The official word is ALL bone and liver mets that lit up on the original scan are no longer visible!!!!!!!!
There is only residual activity remaining in the primary tumour.
So........next step..........surgery. There go my plans.
But, who cares????? That is pretty much the best news I could possibly get. As a stage IV patient I have been ingrained by others who have gone before me that the primary goal is for the mets to be stable. As long as things don't get bigger, you are good. To have all the mets melted away, that is absolutely fantastic!!
And to top it off I get to have a lobster dinner to celebrate.
Next up will be the meeting with the surgeon on Tuesday morning.
I had been expecting a certain level of good news with the PET scan results but this is just so fabulous I almost can't believe it.
Thanks to everyone for all the thoughts and prayers and company while I have travelled this first step of my journey. I couldn't have got to this point without you:-)
Thursday 10 January 2013
Top 10 Most Annoying Side Effects
There is nothing new going on in my life right now, but I have heard that people start asking about me if I don't post regularly so here I am:)
I am hopefully done with chemo now and that has led me to think about all the wonderful side effects I have lived with over the last 6 months. Now, to channel my inner David Letterman here is my top 10 list of the most annoying side effects.
I will start with the least annoying and work my way to most annoying.
#10. Losing my eye brows and eye lashes. It makes me look like a cancer patient. Bleh.
#9. Slowed skin and nail regeneration. This could actually be several bullets but then I would be way over 10 items and each of the reasons behind this item are equally annoying. The basic annoyances with this are the increased sensitivity of my hands and feet as my calluses have disappeared. This has made walking painful at times and I have to be more careful of my hands when cooking or doing anything. I never leave home without wearing gloves these days. And any nicks or cuts or banged up toe nails (I currently have several) take way longer to heal.
#8. No alcohol.
#7. Immune deficiency. I can't eat sushi, eggs benny or anything not fully cooked. At least I
can still eat pancakes.
#6. Hot flashes. Very uncomfortable and definitely interfere with my sleep, which leads me to.....
#5. Insomnia. What can I say, I am the sort who needs 8 hours a night. At least right now I can spend 10-12 hours per day in bed so my total number of hours of sleep isn't too bad.
#4. Being bald. I love my hair. I want my hair back.
#3. Chemo brain. The second major reason why I can't work. Besides, I dislike feeling so stupid all the time and having absolutely no memory.
#2. Fatigue. The primary reason why I can't work. Nuff said.
And the #1 most annoying chemo side effect I have dealt with is...........(take a guess, I'm sure some of you will get it, I have complained about it enough!)
I am hopefully done with chemo now and that has led me to think about all the wonderful side effects I have lived with over the last 6 months. Now, to channel my inner David Letterman here is my top 10 list of the most annoying side effects.
I will start with the least annoying and work my way to most annoying.
#10. Losing my eye brows and eye lashes. It makes me look like a cancer patient. Bleh.
#9. Slowed skin and nail regeneration. This could actually be several bullets but then I would be way over 10 items and each of the reasons behind this item are equally annoying. The basic annoyances with this are the increased sensitivity of my hands and feet as my calluses have disappeared. This has made walking painful at times and I have to be more careful of my hands when cooking or doing anything. I never leave home without wearing gloves these days. And any nicks or cuts or banged up toe nails (I currently have several) take way longer to heal.
#8. No alcohol.
#7. Immune deficiency. I can't eat sushi, eggs benny or anything not fully cooked. At least I
can still eat pancakes.
#6. Hot flashes. Very uncomfortable and definitely interfere with my sleep, which leads me to.....
#5. Insomnia. What can I say, I am the sort who needs 8 hours a night. At least right now I can spend 10-12 hours per day in bed so my total number of hours of sleep isn't too bad.
#4. Being bald. I love my hair. I want my hair back.
#3. Chemo brain. The second major reason why I can't work. Besides, I dislike feeling so stupid all the time and having absolutely no memory.
#2. Fatigue. The primary reason why I can't work. Nuff said.
And the #1 most annoying chemo side effect I have dealt with is...........(take a guess, I'm sure some of you will get it, I have complained about it enough!)
Saturday 5 January 2013
The Breast Conference
Friday was a good day.
I had a very interesting glimpse into the healthcare system in Canada or at least British Columbia. I have been receiving all of my treatments at the BC Cancer Agency. Both my oncologist and radiologist are based out of there as well.
On Fridays, once or twice a month, maybe more frequently, the BCCA holds the Breast Conference. It is a gathering of the oncologists and surgeons, sometimes radiologists from BCCA, and surgeons and docs from the Rapid Access Breast Clinic may also attend, to discuss specific cases and brainstorm. My surgeon from the RABC thought that my case should be discussed and Friday was the day.
I went up to the BCCA and was put into one of the exam rooms. After a couple of minutes the onc that chairs the meeting came in and introduced himself and told me that after my case was discussed some surgeons, maybe some oncs, some residents, and students will come in to examine me and ask me some questions.
I waited about another 15 minutes and three people, 2 surgeons and another woman, came in. The 2 surgeons examined me and asked me some questions. The basic crux of the discussion was that after having seen my file they felt that I was responding extremely well to treatment so it looked like there were a lot of possible options for the next step in my treatment.
One surgeon asked if I was doing 6 rounds of Taxol. When I said no, only 4, and I had just had my 4th, he suggested that perhaps I should consider having 6.
For a bit of background on the idea of 6, I had actually thought about that about a week ago, cringed, and stuffed that thought in a box and buried it deep in the files of my brain. I am so ready to be done with chemo.
With round 3 of Taxol I did not feel I had as much response as with the first 2 rounds. This is similar to what happened with the first set of drugs. Each round it felt as though the tumour response was decreasing. When I had round 4 of Taxol, however, the response was almost immediate. Within hours of receiving the drugs I could feel tumour response. Maybe round 3 was a blip and I should have more Taxol.
Ugggh. I don't want more chemo yet. Into the box you go!
So, when the surgeon asked about 6 rounds I did say I had thought about it but I was not sure. I was really ready to take a break and recover from chemo. He said he could understand that feeling and again he and the other surgeon said that there were lots of options available.
The three people left and I waited some more.
After another half hour or so my surgeon from the RABC came in. She had heard how much response I had had since she last saw me and wanted to examine me herself. She was very impressed and we discussed a bit more about my options. Because of the response I have had she feels we don't have to rush into any decision. We will stick with our original plan of waiting to see what the scans show. Also, it is possible to delay surgery for now and just have radiation. Then, should there been any recurrence at the primary site we have the option of surgery later.
For now we will wait for the scans.
After another about 45 minutes my oncologist came in. She apologized for the long wait and that my case had been put up first and it ended up taking up a large portion of the meeting time and they did have other cases they needed to cover so things ended up running long. I don't mind waiting if all the local cancer brains are debating the best course of action for my care!
My onc had not seen my since before Christmas and I told her there had definitely been tumour response since then so then she examined me. Just in case your keeping track that is 4 people groping me in an hour and a half - the joy of the cancer patient, you must have no shame;)
After the exam she said that during the meeting people had lots of ideas so she is now more confused than ever but she is definitely booking me for a PET scan.
At least something was decided!
By having all three of the bone/CT/PET scans done we can do a thorough comparison of the before and after and have a really complete picture of exactly what is currently going on.
Regarding surgery, the general consensus was that surgery would not prolong my life span so at this point in time it is not truly necessary. Although one person did suggest that the planned radiation would be easier to do if I had surgery first. So, the surgery decision will continue to be delayed until after the scans come back.
Regarding the 6 rounds of Taxol, my onc said that right from day one she had really intended my to only do a total of 8 rounds. Her thinking is that by only doing 4 Taxol now we can save it for when the cancer starts getting active again. We already know the tumour responds to it, and the side effects are not too horrendous so we can pull it back out in the future and do another 4 rounds with it before having to start moving onto a new drug.
If I had 6 rounds now that would remove Taxol from the arsenal and we would have to start with something totally different when the cancer starts activating. The reason for the usual limit of 6 is the high rate of nerve damage to the hands and feet.
My onc is hoping to push through the PET scan so we have the results before my next treatment to help us make a decision about whether more Taxol would be helpful. If the mets to my bones and liver are mostly gone then more Taxol would really be overkill, I think, and we can move right on to the radiation and focus on the primary tumour.
So, yes, Friday was a great day.
The only decision made was that I will have a PET scan, but any time a cancer patient is told that they are responding so well to treatment that there are endless further treatment options and there is no need to make any snap decisions, that is utterly fantastic!!!
And a certainly feel like I am getting world class care.
I had a very interesting glimpse into the healthcare system in Canada or at least British Columbia. I have been receiving all of my treatments at the BC Cancer Agency. Both my oncologist and radiologist are based out of there as well.
On Fridays, once or twice a month, maybe more frequently, the BCCA holds the Breast Conference. It is a gathering of the oncologists and surgeons, sometimes radiologists from BCCA, and surgeons and docs from the Rapid Access Breast Clinic may also attend, to discuss specific cases and brainstorm. My surgeon from the RABC thought that my case should be discussed and Friday was the day.
I went up to the BCCA and was put into one of the exam rooms. After a couple of minutes the onc that chairs the meeting came in and introduced himself and told me that after my case was discussed some surgeons, maybe some oncs, some residents, and students will come in to examine me and ask me some questions.
I waited about another 15 minutes and three people, 2 surgeons and another woman, came in. The 2 surgeons examined me and asked me some questions. The basic crux of the discussion was that after having seen my file they felt that I was responding extremely well to treatment so it looked like there were a lot of possible options for the next step in my treatment.
One surgeon asked if I was doing 6 rounds of Taxol. When I said no, only 4, and I had just had my 4th, he suggested that perhaps I should consider having 6.
For a bit of background on the idea of 6, I had actually thought about that about a week ago, cringed, and stuffed that thought in a box and buried it deep in the files of my brain. I am so ready to be done with chemo.
With round 3 of Taxol I did not feel I had as much response as with the first 2 rounds. This is similar to what happened with the first set of drugs. Each round it felt as though the tumour response was decreasing. When I had round 4 of Taxol, however, the response was almost immediate. Within hours of receiving the drugs I could feel tumour response. Maybe round 3 was a blip and I should have more Taxol.
Ugggh. I don't want more chemo yet. Into the box you go!
So, when the surgeon asked about 6 rounds I did say I had thought about it but I was not sure. I was really ready to take a break and recover from chemo. He said he could understand that feeling and again he and the other surgeon said that there were lots of options available.
The three people left and I waited some more.
After another half hour or so my surgeon from the RABC came in. She had heard how much response I had had since she last saw me and wanted to examine me herself. She was very impressed and we discussed a bit more about my options. Because of the response I have had she feels we don't have to rush into any decision. We will stick with our original plan of waiting to see what the scans show. Also, it is possible to delay surgery for now and just have radiation. Then, should there been any recurrence at the primary site we have the option of surgery later.
For now we will wait for the scans.
After another about 45 minutes my oncologist came in. She apologized for the long wait and that my case had been put up first and it ended up taking up a large portion of the meeting time and they did have other cases they needed to cover so things ended up running long. I don't mind waiting if all the local cancer brains are debating the best course of action for my care!
My onc had not seen my since before Christmas and I told her there had definitely been tumour response since then so then she examined me. Just in case your keeping track that is 4 people groping me in an hour and a half - the joy of the cancer patient, you must have no shame;)
After the exam she said that during the meeting people had lots of ideas so she is now more confused than ever but she is definitely booking me for a PET scan.
At least something was decided!
By having all three of the bone/CT/PET scans done we can do a thorough comparison of the before and after and have a really complete picture of exactly what is currently going on.
Regarding surgery, the general consensus was that surgery would not prolong my life span so at this point in time it is not truly necessary. Although one person did suggest that the planned radiation would be easier to do if I had surgery first. So, the surgery decision will continue to be delayed until after the scans come back.
Regarding the 6 rounds of Taxol, my onc said that right from day one she had really intended my to only do a total of 8 rounds. Her thinking is that by only doing 4 Taxol now we can save it for when the cancer starts getting active again. We already know the tumour responds to it, and the side effects are not too horrendous so we can pull it back out in the future and do another 4 rounds with it before having to start moving onto a new drug.
If I had 6 rounds now that would remove Taxol from the arsenal and we would have to start with something totally different when the cancer starts activating. The reason for the usual limit of 6 is the high rate of nerve damage to the hands and feet.
My onc is hoping to push through the PET scan so we have the results before my next treatment to help us make a decision about whether more Taxol would be helpful. If the mets to my bones and liver are mostly gone then more Taxol would really be overkill, I think, and we can move right on to the radiation and focus on the primary tumour.
So, yes, Friday was a great day.
The only decision made was that I will have a PET scan, but any time a cancer patient is told that they are responding so well to treatment that there are endless further treatment options and there is no need to make any snap decisions, that is utterly fantastic!!!
And a certainly feel like I am getting world class care.
Wednesday 2 January 2013
Ringing in 2013
Wow! What a difference a year makes. Who in a million years would have ever thought I would be a blogger?
I guess that is what having cancer can do to a person.
2012 was quite the year. I got a new job and I was diagnosed with a terminal illness. Hopefully 2013 will not be as dramatic.
I am not making any resolutions, but I am hoping that I will be blogging less about cancer and more about the places I travel when I get back to work.
I had my last Taxol treatment on Dec 28th so I am dealing with the last dregs of the joint pain right now. That should be done by Thursday. And, oh boy, the hot flashes! I didn't have any during the third taxol treatment so I was hoping to be done with them. No. They are super frequent and super hot. At least it is only 2 degrees outside.
I will be getting Herceptin from now on until it stops working. I have a bone scan scheduled for January something. I have it written down somewhere though so I am pretty sure I won't forget about it. And I will also get a CT scan but I am pretty sure I don't have the date for that yet.
I can't wait for my brain to start functioning more normally. I am really bad at making lists.
Wishing everyone a happy and healthy 2013!
I guess that is what having cancer can do to a person.
2012 was quite the year. I got a new job and I was diagnosed with a terminal illness. Hopefully 2013 will not be as dramatic.
I am not making any resolutions, but I am hoping that I will be blogging less about cancer and more about the places I travel when I get back to work.
I had my last Taxol treatment on Dec 28th so I am dealing with the last dregs of the joint pain right now. That should be done by Thursday. And, oh boy, the hot flashes! I didn't have any during the third taxol treatment so I was hoping to be done with them. No. They are super frequent and super hot. At least it is only 2 degrees outside.
I will be getting Herceptin from now on until it stops working. I have a bone scan scheduled for January something. I have it written down somewhere though so I am pretty sure I won't forget about it. And I will also get a CT scan but I am pretty sure I don't have the date for that yet.
I can't wait for my brain to start functioning more normally. I am really bad at making lists.
Wishing everyone a happy and healthy 2013!
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