Friday, October 16, 2009
Thursday, April 30, 2009
Wedding Update
We have a wedding Bulletin. Due to concerns over risks of a World-wide pandemic ,that may have originated in Mexico, the wedding of Reagan and Bing is being relocated to the Island of Kauai. (I couldn't make this stuff up. What next?) My radiation oncologist, Dr Mattson, who is from Hawaii, has recommended an excellent Wedding planner who could handle such a last-minute event.
We are planning to leave for Kauai on May 5, and I for one, plan to have a really good time. We are pleased to be celebrating this union on the original schedule, if not in the original place. For those not able to fly to the Hawaiian Islands on short notice, remember there will be another party coming soon to an island much, much nearer to you. For me, the ability to do so, makes me feel very lucky indeed, today. I am sorry for all those unable to be there, but I will take lots of pictures to share with all of you.
We are planning to leave for Kauai on May 5, and I for one, plan to have a really good time. We are pleased to be celebrating this union on the original schedule, if not in the original place. For those not able to fly to the Hawaiian Islands on short notice, remember there will be another party coming soon to an island much, much nearer to you. For me, the ability to do so, makes me feel very lucky indeed, today. I am sorry for all those unable to be there, but I will take lots of pictures to share with all of you.
Change, all changes, Cambio, Todo Cambio
I apologize for the fact that it has been a long time since I have updated the posting. Mostly I have been just scrambling to keep up, with treatments, changes in plans, decisions, just life. My energy has been less but I really don't feel too bad. The radiation has been okay, and my skin is great. I do feel pretty stressed though.
I have been doing a lot of research on my particular type of breast cancer in the last three weeks, and have become increasingly unsure of the treatment course decided upon. I am comfortable with the decision to do lumpectomy and whole breast irradiation as being sufficient to treat the local disease, but the information that there are questions about whether even tiny Triple negative breast cancers need systemic chemotherapy treatment, which is being questioned with very preliminary research, has been really bothering me. The standard of care suggests below 1 cm with no node spread "May" not need chemotherapy, if over that in size, yes. If below .5 not needed. My tumor was .8, a gray zone, and accorded to Doctor discretion, based on statistics, ....chemo not necessary. The numbers quoted did not seem to suggest that Chemotherapy changed things very much. My chance of no recurrance is very, very good. It seemed a reasonable thing to follow the standard of care, and no chemo.
However, the cancer I have is aggressive, may spread by other means than lymph system, and tends to metastise early if it is going to. If this one hasn't shown up again in 18 months to two years, it likely won't and the numbers get better later, unlike my previous ER+ tumor where the risk of recurrance stays the same over ten years. The thing is, if it does metastasize, it is sneaky about it and goes places that only symptoms will find it like brain, bone, liver, etc. Other breast cancers are like this also and at that point they can only slow it down not cure it.
I have discovered that if treated early enough, this cancer is acutely sensitive to chemotherapy. Since I have some concern that it could already be somewhere else, I feel that now is my chance to stop it everywhere it could be, and that is why I have chosen to have the chemotherapy after all. The other element of this, is that there is some doubt in the research community about the best way to treat these very aggressive, very tiny cancers, as there is not much data on this and if perhaps it should be treated more aggressively, even though small. The reason there is not much data on the early cancers, is that they are usually found in a later stage. So , In my mind, the numbers may not really reflect the true risks. The numbers they are quoting me on recurrance risk might be re-evaluated some day. Lets say I just trust my "gut instinct" more than their statistics. My "gut" is telling me to be more aggressive. Being an engineer, Ron loves those numbers, and I do wish everyone diagnosed with cancer could have the "good numbers" that I have and I know I am not being very scientific in not trusting them more. The thing is I don't want to regret not fighting harder, when I had a chance to perhaps beat this thing for good. After chemo, I hope to be able to rest easy, that I have done everything, and if it comes back anyway, which it can, that I tried and I can fight it again if necessary. I will begin chemotherapy on May 19, and will be doing 4 cycles three weeks apart. I have spoken with several other survivors and I am confident that this is the right course of action for me. We will not know if having the chemotherapy has changed the course at all, only if it doesn't, but I can't change that. I am reminded of my favorite, "Serenity Prayer"
God, grant me the serenity to accept the things I cannot change,
The courage, to change the things I can,
And the Wisdom to know the difference.
I am praying for this to be a "wise" decision.
Dee
I have been doing a lot of research on my particular type of breast cancer in the last three weeks, and have become increasingly unsure of the treatment course decided upon. I am comfortable with the decision to do lumpectomy and whole breast irradiation as being sufficient to treat the local disease, but the information that there are questions about whether even tiny Triple negative breast cancers need systemic chemotherapy treatment, which is being questioned with very preliminary research, has been really bothering me. The standard of care suggests below 1 cm with no node spread "May" not need chemotherapy, if over that in size, yes. If below .5 not needed. My tumor was .8, a gray zone, and accorded to Doctor discretion, based on statistics, ....chemo not necessary. The numbers quoted did not seem to suggest that Chemotherapy changed things very much. My chance of no recurrance is very, very good. It seemed a reasonable thing to follow the standard of care, and no chemo.
However, the cancer I have is aggressive, may spread by other means than lymph system, and tends to metastise early if it is going to. If this one hasn't shown up again in 18 months to two years, it likely won't and the numbers get better later, unlike my previous ER+ tumor where the risk of recurrance stays the same over ten years. The thing is, if it does metastasize, it is sneaky about it and goes places that only symptoms will find it like brain, bone, liver, etc. Other breast cancers are like this also and at that point they can only slow it down not cure it.
I have discovered that if treated early enough, this cancer is acutely sensitive to chemotherapy. Since I have some concern that it could already be somewhere else, I feel that now is my chance to stop it everywhere it could be, and that is why I have chosen to have the chemotherapy after all. The other element of this, is that there is some doubt in the research community about the best way to treat these very aggressive, very tiny cancers, as there is not much data on this and if perhaps it should be treated more aggressively, even though small. The reason there is not much data on the early cancers, is that they are usually found in a later stage. So , In my mind, the numbers may not really reflect the true risks. The numbers they are quoting me on recurrance risk might be re-evaluated some day. Lets say I just trust my "gut instinct" more than their statistics. My "gut" is telling me to be more aggressive. Being an engineer, Ron loves those numbers, and I do wish everyone diagnosed with cancer could have the "good numbers" that I have and I know I am not being very scientific in not trusting them more. The thing is I don't want to regret not fighting harder, when I had a chance to perhaps beat this thing for good. After chemo, I hope to be able to rest easy, that I have done everything, and if it comes back anyway, which it can, that I tried and I can fight it again if necessary. I will begin chemotherapy on May 19, and will be doing 4 cycles three weeks apart. I have spoken with several other survivors and I am confident that this is the right course of action for me. We will not know if having the chemotherapy has changed the course at all, only if it doesn't, but I can't change that. I am reminded of my favorite, "Serenity Prayer"
God, grant me the serenity to accept the things I cannot change,
The courage, to change the things I can,
And the Wisdom to know the difference.
I am praying for this to be a "wise" decision.
Dee
Sunday, April 19, 2009
Spring
The weather here in Lewiston is really starting to look better to us. We have had lots of sunshine and morning frosts are gettting quite rare. It is getting up in to the 60's some days. The daffodils and hyacynths are blooming and the trees are budded, and hopefully will soon have some leaves. It will just be getting beautiful here, when it will be time for us to leave for Mexico. Sure did get the plan turned inside out this year, for where to be when!
My treatment is coming to an end, just 8 more sessions to go, and still no radiation burns, just a slight color change. I do get pretty sore after a treatment, but the discomfort subsides by the next morning. Today I get the day off. I had a Saturday treatment this week, which allows us to finish the day before we leave for Mexico, instead of having to go from the last treatment to the airport. A major improvement in the plan. I am still using aloe vera on my skin, and it is doing a great moisturizing job. I am finding myself quite fatigued and emotional these days. Better not wear mascara at the wedding.
This week we had some challenges develop. Cameron was down-sized at his work on Wednesday, and big blow to the guy that prefers to make the leaving decisions himself. He has hit the ground running though, with lots of options in the work, and his resume, always at the ready. We are anxious about the timing with his house purchase in the next few weeks, but we think things will work out for that.
We have celebrated this week, with the 2nd birthday of MaKenna on April 15, and Brittany's birthday on Saturday. Everyone enjoyed gettting together at Tyler and Amy's house. Ron is consulting and getting the motorhome ready to be sold on e-bay.
The ice went off lake muskoka on Friday. The Taylors are freed from their island.
My treatment is coming to an end, just 8 more sessions to go, and still no radiation burns, just a slight color change. I do get pretty sore after a treatment, but the discomfort subsides by the next morning. Today I get the day off. I had a Saturday treatment this week, which allows us to finish the day before we leave for Mexico, instead of having to go from the last treatment to the airport. A major improvement in the plan. I am still using aloe vera on my skin, and it is doing a great moisturizing job. I am finding myself quite fatigued and emotional these days. Better not wear mascara at the wedding.
This week we had some challenges develop. Cameron was down-sized at his work on Wednesday, and big blow to the guy that prefers to make the leaving decisions himself. He has hit the ground running though, with lots of options in the work, and his resume, always at the ready. We are anxious about the timing with his house purchase in the next few weeks, but we think things will work out for that.
We have celebrated this week, with the 2nd birthday of MaKenna on April 15, and Brittany's birthday on Saturday. Everyone enjoyed gettting together at Tyler and Amy's house. Ron is consulting and getting the motorhome ready to be sold on e-bay.
The ice went off lake muskoka on Friday. The Taylors are freed from their island.
Thursday, April 9, 2009
Radiation Mid-point
Here I am at the mid-point of radiation treatment. I can hardly believe that I have not posted in so much time. I do spend some time on-line everyday replying to e-mails, shopping and doing internet research on various topics. Between that and eating and going to Roswell every day and frequent siestas, the days go by. I guess they go by fast, but my life feels like it is lived in slow motion.
The treatments are going well, my skin is staying in good condition. There is a burning sensation and some swelling of the treated area, and a little discomfort but it isn't too bad. I continue to use the aloe vera gel on my skin twice a day. The surgical sites are well- healed and looking better every day.
Cameron and Jessica were successful in their bid on the foreclosed house. We are very happy about their purchase of the house on 120 Lincoln Ave. in North Tonawanda. They have not yet had an offer on their old house, but with the nicer spring weather I am sure something will happen soon. They will get the house on May 6, just before they leave to go to Reagan's wedding. They can have a little vacation before the work begins. The house needs some TLC, but I think they will be very happy with it.
Not much else happening here. Ron is working on projects and we have done some shopping for Reagan's wedding and for our return to Mexico in a few weeks. We are planning a family dinner for Easter on Saturday.
Another snowstorm happened this week, which has kept us off the bikes, but the snow is gone now, and it is time to get back to exercising. The green grass is much nicer to see than the snow was.
The treatments are going well, my skin is staying in good condition. There is a burning sensation and some swelling of the treated area, and a little discomfort but it isn't too bad. I continue to use the aloe vera gel on my skin twice a day. The surgical sites are well- healed and looking better every day.
Cameron and Jessica were successful in their bid on the foreclosed house. We are very happy about their purchase of the house on 120 Lincoln Ave. in North Tonawanda. They have not yet had an offer on their old house, but with the nicer spring weather I am sure something will happen soon. They will get the house on May 6, just before they leave to go to Reagan's wedding. They can have a little vacation before the work begins. The house needs some TLC, but I think they will be very happy with it.
Not much else happening here. Ron is working on projects and we have done some shopping for Reagan's wedding and for our return to Mexico in a few weeks. We are planning a family dinner for Easter on Saturday.
Another snowstorm happened this week, which has kept us off the bikes, but the snow is gone now, and it is time to get back to exercising. The green grass is much nicer to see than the snow was.
Saturday, March 28, 2009
First Radiation week
The time is going quite fast here. There seems to be little time in the day for other things after I do the 2-3 hours to and from the hospital for my treatment and then have my siesta. The leisurely breakfasts also take up a lot of time. We are trying to be very laid back, but I guess it is still stressful. I started having heart palpitations on Wednesday: it doesn't seem to be serious, but is likely due to stress. I wore a holter monitor for 24 hours and will get the report next week. I really think I just need a good massage therapist,( preferably male and good looking).
In the meantime, the treatments are going well, with no bad effects to my skin. Five down and twenty-five to go. I will finish on May 1 unless they are able to fit me in for some Saturday sessions. We are planning our return for May 2, but have not booked it yet in the hope that we may be able to leave earlier. We would like to get there as soon as possible so we can file for our FM3 resident visa when we get back - this will let us renew the license plates on the Jeep. This is a change in law - we were able to buy our Jeep as tourists, but we can't renew the plates until we have resident status.
On Wednesday we went to see the house that Cameron and Jessica are interested in and they put in an offer on it. It is a foreclosure and there were several other interested parties, so we are all waiting anxiously to hear the outcome. Jessica was a real trooper, to be up moving around so much after her surgery on Monday. She is doing very well, saw her Doctor on Friday and he is pleased with her progress. She plans to return to work on Monday. She and Cameron joined us for Fish Fry on Friday night and took their Margarita pup back home with them for a while. Daisy would have liked to go too I think, as she misses Jessica.
Plans are coming together for Reagan's wedding. We've picked out my dress and Ron's suit. A new experience for me - clothes shopping on the internet. I also have some new watercolors coming soon, and I hope they will be the inspiration I need to get going on painting again.
Today we took advantage of the milder temperatures to do some yard clean-up and we have quite the leaf pile out there. Wonder who will do it next April? - we will be in MEXICO. Apparently there is SNOW in the forecast for Monday. I prefer the greening grass.
Ron's mother is planning to visit soon for some shopping in preparation for Reagan's wedding trip: she is really looking forward to the wedding. Cameron, Jessica and Tyler are also planning to attend and it will be a very special family time. Reagan has put a lot of thought into making it a special, intimate occasion.
We are planning to spend several nights at Hacienda Santa Ines with our family; and the construction crew is working hard to get things ready for us. The roof is now completed on Cameron's house, and the electricity should be going in soon to his house and Reagan's. The doors and windows for his house will be installed soon also. Tyler's house has its roof, but is not ready for occupancy yet, as we are still negotiating the details of the doors and windows with the carpenter. But next year we will have lots of guest accomodations. Get your bookings in early! We will be shopping for some twin beds when we go back. In November we will buy another king size bed for guests. It is nice to have some twin beds too; they can be moved around to reconfigure accomodation as needed. We are looking so forward to having this time in Mexico together.
We are also spending time planning for Reagan's wedding party in Muskoka on September 12. Ron has been working on recorded music for when the bands aren't playing on the party weekend . We have a busy construction schedule ahead of us, but we have lined up our contractors and we've had offers of help from some several friends, so I am optimistic things will be in great shape by fall. It will be a busy time. I hope this summer's weather is better than last summer, but when you are working, there is both inside and outside work, so I guess it doesn't matter too much. Lots to keep us busy.
In the meantime, the treatments are going well, with no bad effects to my skin. Five down and twenty-five to go. I will finish on May 1 unless they are able to fit me in for some Saturday sessions. We are planning our return for May 2, but have not booked it yet in the hope that we may be able to leave earlier. We would like to get there as soon as possible so we can file for our FM3 resident visa when we get back - this will let us renew the license plates on the Jeep. This is a change in law - we were able to buy our Jeep as tourists, but we can't renew the plates until we have resident status.
On Wednesday we went to see the house that Cameron and Jessica are interested in and they put in an offer on it. It is a foreclosure and there were several other interested parties, so we are all waiting anxiously to hear the outcome. Jessica was a real trooper, to be up moving around so much after her surgery on Monday. She is doing very well, saw her Doctor on Friday and he is pleased with her progress. She plans to return to work on Monday. She and Cameron joined us for Fish Fry on Friday night and took their Margarita pup back home with them for a while. Daisy would have liked to go too I think, as she misses Jessica.
Plans are coming together for Reagan's wedding. We've picked out my dress and Ron's suit. A new experience for me - clothes shopping on the internet. I also have some new watercolors coming soon, and I hope they will be the inspiration I need to get going on painting again.
Today we took advantage of the milder temperatures to do some yard clean-up and we have quite the leaf pile out there. Wonder who will do it next April? - we will be in MEXICO. Apparently there is SNOW in the forecast for Monday. I prefer the greening grass.
Ron's mother is planning to visit soon for some shopping in preparation for Reagan's wedding trip: she is really looking forward to the wedding. Cameron, Jessica and Tyler are also planning to attend and it will be a very special family time. Reagan has put a lot of thought into making it a special, intimate occasion.
We are planning to spend several nights at Hacienda Santa Ines with our family; and the construction crew is working hard to get things ready for us. The roof is now completed on Cameron's house, and the electricity should be going in soon to his house and Reagan's. The doors and windows for his house will be installed soon also. Tyler's house has its roof, but is not ready for occupancy yet, as we are still negotiating the details of the doors and windows with the carpenter. But next year we will have lots of guest accomodations. Get your bookings in early! We will be shopping for some twin beds when we go back. In November we will buy another king size bed for guests. It is nice to have some twin beds too; they can be moved around to reconfigure accomodation as needed. We are looking so forward to having this time in Mexico together.
We are also spending time planning for Reagan's wedding party in Muskoka on September 12. Ron has been working on recorded music for when the bands aren't playing on the party weekend . We have a busy construction schedule ahead of us, but we have lined up our contractors and we've had offers of help from some several friends, so I am optimistic things will be in great shape by fall. It will be a busy time. I hope this summer's weather is better than last summer, but when you are working, there is both inside and outside work, so I guess it doesn't matter too much. Lots to keep us busy.
Sunday, March 22, 2009
Shopping Therapy
A great weekend of shopping. First Ron and I got busy shopping for our wedding clothes online. We have both been very successful. I have an e-bay bid in on a vintage hat, so won't know until tomorrow about that. I have ordered my dress. Ron has found some suits he likes.
We also went shopping for houses with Cameron and Jessica and that too was successful. They are considering placing an offer soon.
After that Jessica and I went shopping at the galleria mall. Jessica is having a surgery tomorrow and I am starting my radiation, and shopping was a great way to take our minds off that! We both found party dresses for the wedding weekend, and a few other bargains also. It was really a fun day. Now, I think early to bed is in order, since I missed my siesta!
We also went shopping for houses with Cameron and Jessica and that too was successful. They are considering placing an offer soon.
After that Jessica and I went shopping at the galleria mall. Jessica is having a surgery tomorrow and I am starting my radiation, and shopping was a great way to take our minds off that! We both found party dresses for the wedding weekend, and a few other bargains also. It was really a fun day. Now, I think early to bed is in order, since I missed my siesta!
Friday, March 20, 2009
Sunshine in New York
The weather is doing its best to convince us that spring is here. The sun is strong and you would think spring weather was coming now, in conjunction with the first day of spring. We northerners know not to get our hopes too high, as we likely have one or two more snows to live through yet, but we know the end of winter is near. It really helps my mood.
We went up to Daisy Island, for an overnight and one last check before we can't get there for awhile. Ron needed to gather some tools and his guitar, for our period of confinement to Lewiston. All is well there and the heating system is doing a great job. It was 74 degrees inside and very comfortable. There isn't much snow and walking over and all around the property was easy. Daisy and Margarita had a great time. The forecast is for rain and warmer temperatures on the weekend so the ice will be deteriorating soon.
We had such a quick trip, because I needed to be at Roswell today at noon for a practise session, called a "black session" for checks and more measuring and practising the breathing technique for treatment. The radiation will begin on Monday at noon and proceed until May 1. They may try to fit me in for some Saturday sessions, as we go along, in order for me to have more time to recover before the wedding. At any rate, I should have at least a week to get it together before the big day. Everything seems to be working out under control. I like that.
We went up to Daisy Island, for an overnight and one last check before we can't get there for awhile. Ron needed to gather some tools and his guitar, for our period of confinement to Lewiston. All is well there and the heating system is doing a great job. It was 74 degrees inside and very comfortable. There isn't much snow and walking over and all around the property was easy. Daisy and Margarita had a great time. The forecast is for rain and warmer temperatures on the weekend so the ice will be deteriorating soon.
We had such a quick trip, because I needed to be at Roswell today at noon for a practise session, called a "black session" for checks and more measuring and practising the breathing technique for treatment. The radiation will begin on Monday at noon and proceed until May 1. They may try to fit me in for some Saturday sessions, as we go along, in order for me to have more time to recover before the wedding. At any rate, I should have at least a week to get it together before the big day. Everything seems to be working out under control. I like that.
Tuesday, March 17, 2009
The Treatment Track
We have returned to Lewiston, New York and have begun the process of radiation treatment for my cancer. This is part of the protocol for Partial Breast Lumpectomy and much the same as the treatment I had three years ago. However, there continue to be changes in treatment even in just three years. The targeting is more precise, I met a new and innovative machine, and as is usual, met some more upbeat and brilliant staff people. They make the process of treatment, if not completely enjoyable, much more fun than you would expect it to be. I was shown the pictures of treatment from last time, Xray scans of exactly what was treated and by how much, and a description of how they will do it this time. Only a small portion of my lung was irradiated last time, and it appears that most of my heart will be out of the way of the radiation beam this time. They are trying the planning two ways; with an inspired breath-hold and with breathing normally, to determine which gives my other organs the best protection. They are really doing a thorough job for me. There is a device that shows me that I am taking and holding the same amount of breath each time on cue. It took a little practise, but it isn't too hard to do. Like a new kind of video game.
In the interests of giving me as much time before Reagan and Bing's wedding as possible, they are custom designing a program for me that would give me a little higher dose over a slightly shorter time period, that should give me about one week to recover before the wedding.
They are doing the planning in a much shorter time than usual. It usually takes 10 days to two weeks for this process. They measured, mapped, marked and tatooed my chest today and hope to have the details worked out by Friday so that I can start treatment by Monday. You can't do much better than that!! I did very well with my skin not burning the last time, so that is causing them to think the higher dose will be okay for me. This protocol is used in several other countries, but it has not yet been adopted as standard practice at Roswell. So I must trust that the same strategy of the honey ingestion and Aloe on my skin will help me to get through this again. I told Ron that I think I should have breast massage with aloe at least twice per day. He'll try to fit me in to his schedule!
In the interests of giving me as much time before Reagan and Bing's wedding as possible, they are custom designing a program for me that would give me a little higher dose over a slightly shorter time period, that should give me about one week to recover before the wedding.
They are doing the planning in a much shorter time than usual. It usually takes 10 days to two weeks for this process. They measured, mapped, marked and tatooed my chest today and hope to have the details worked out by Friday so that I can start treatment by Monday. You can't do much better than that!! I did very well with my skin not burning the last time, so that is causing them to think the higher dose will be okay for me. This protocol is used in several other countries, but it has not yet been adopted as standard practice at Roswell. So I must trust that the same strategy of the honey ingestion and Aloe on my skin will help me to get through this again. I told Ron that I think I should have breast massage with aloe at least twice per day. He'll try to fit me in to his schedule!
Friday, March 13, 2009
Decision Complete
We are returning to New York to begin my radiation treatment. Doctor Khan is fast tracking the preparation for me and by beginning next week, I will be free for Reagan and Bing s celebration on May 9. It is not advisable to delay treatment until after the wedding as the tumor was a high grade and it is too risky. Once begun, treatment cannot be interrupted for more than a couple of days. So that does not work either. We are sad to be leaving here so soon, but at least we had this time. We both feel better for it. We very much regret that we will be unable to spend time with friends here in Mexico. Hopefully our lives will be again our own, when this is behind us.
Monday, March 9, 2009
Mexico Powered!
We are now at the end of our third day in Mexico, and despite a much faster pace of life, my internal battery is charged well beyond any level I have known in the past 3 months. Since our arrival we have re-connected and breakfasted, lunched, dined, partied, imbibed, danced, toured, shopped, explored, philosophized and learned with many of our friends in Merida. We have been graciously hosted by Carlos and by Mary Anne and Allan. We have also made a few new friends along the way. The social calendar is now filled for the next two weeks and we will leave for the country tomorrow to visit good friends there and to begin to accomplish some of the work we have been unable to attend to. We look forward to connecting with many other friends in Merida when we return to the city later in the week.
Decisions . . . Decisions
This morning I had a long telephone conversation with Dr. Khan, my radiation oncologist, to explore various approaches to my post surgical treatment. He was most generous with his time, and is exploring the efficacy of four possible approaches to treatment, all of which would make me available for Reagan and Bing's wedding on May 9. The nominees are:
Decisions . . . Decisions
This morning I had a long telephone conversation with Dr. Khan, my radiation oncologist, to explore various approaches to my post surgical treatment. He was most generous with his time, and is exploring the efficacy of four possible approaches to treatment, all of which would make me available for Reagan and Bing's wedding on May 9. The nominees are:
- an accelerated program of conventional radiation. This would involve 33 treatments over 7 weeks and would necessitate a return to New York this weekend, social calendar notwithstanding.
- a deferred program of conventional radiation. This would again involve 33 treatments but would be initiated in mid May
- a fractionated program of radiation. This would involve a shorter term of treatment at a slightly increased dosage. This would begin in early April.
- tumour bed radiation. I would receive 5 treatments of higher level radiation focused on the area from which the tumour was removed. This is a clinical trial rather than a standard protocol and there is some doubt whether I could qualify for this program.
Dr. Khan is going to evaluate the impact these various options are likely to have on the success of treatment and advise me. I will then make my decision which way to proceed. I will also investigate the potential to have option 1 performed in Merida; Dr. Khan agrees this would be a viable option.
Tonight, with Chuck and Mary Ann Taylor, we returned to our favourite destination in Merida, Restaurante Amaro, and were greeted like family, with warmth, joy and relief. Enrique danced salsa with me as he had promised by internet. Jaime and the waiters made us more than welcome, anticipating, with total accuracy, our orders. Roberto Cañedo, who played and sang during my birthday party, was once again on stage and performed many of my favorite songs. Olga, the owner, was not able to be there, but upon learning we were back in Merida, called to congratulate me on my return and to invite us to her home to welcome us back. She also invited us to attend a fundraiser for AIDS children sponsored by our friends Allan and Mary Ann, which we had already planned to attend. We could not have been made more at home.
In all, this has been a glorious three days, and has has done much to alleviate the trauma of the last three months. It is wonderful to be back in our winter home.
Thursday, March 5, 2009
Escape to Mexico
We are finally making our long desired escape back to Mexico. We will be dining with friends in Merida Friday evening. We are flying out on Friday, so it will be a long day, but we are going to try to travel light this time. I am feeling really good about getting back to work on the project as soon as I am ready, but especially getting back to all of our friends in Merida; Some of whom are just about ready to head back north. Some of our friends had plans to be with us in Mexico, and had to change their plans. I am very sorry that happened, but we could see no way around being hostage to the medical system, until we could get the all-clear. There just didn't seem to be any way to get things accomplished faster. But now I am FREE! well, almost.
Wednesday, March 4, 2009
The Best News
Today was a Good News Day for me. Dr O'Connor gave me the news that I do not need to do Chemotherapy! It is considered that the surgery and radiation are sufficient treatment for me at this time, and there is not a reason to do a regimen of Chemo. Of course there is never a complete guarantee that cancer could not recur, but my odds are only a little more than the general population, and I will take those odds. They feel confident that since the cancer was caught very early, there is every possibility that the surgery and radiation will have taken care of the problem. That's why we do those Mammogram's. It really is worth it to catch this early!!!!
Since I don't have to give up drinking for chemo, here's a toast to the Mammogram Departments Everywhere.
Since I don't have to give up drinking for chemo, here's a toast to the Mammogram Departments Everywhere.
Tuesday, March 3, 2009
Outing for Visiting
Today Ron took me out of the house for a nice trip to Port Colborne, to visit Aunt Mer and Uncle Edgar. It has been quite some time since I have seen Aunt Mer, and it was good to see them both today. Aunt Mer has late-stage Alzheimer's disease, and is pretty quiet these days, but it was apparent to Ron and I that she was aware of our visit and perhaps knew who we were. One of the nurses came over to express her surprise to us at how alert and chatty Marilyn was with us. We couldn't really tell what she was trying to tell us, but there were lots of recognizable phrases and it brought back good memories to hear her voice and way of expressing herself. She seemed pleased that we were there. She ate a good lunch for Uncle Edgar when he came in, but seemed content to let him do the talking then. Uncle Edgar does a wonderful job of caring for his wife, and comes twice a day for her meals.
After the visit, we went to see Gord and Pam and ended up going out to lunch for really good fish fry with them. Then back home for a needed rest.
Gord and Pam gave up on waiting for us in Mexico and came back early, and decided to save their vacation time and money for a trip next November, when hopefully we can be there with them. I'll try not to mess them up again.
I hope to have some real information for the blog tomorrow. It will feel better I think, to really know the plan. I know there is more to be done. I just want to heal well, and then get on with it!
After the visit, we went to see Gord and Pam and ended up going out to lunch for really good fish fry with them. Then back home for a needed rest.
Gord and Pam gave up on waiting for us in Mexico and came back early, and decided to save their vacation time and money for a trip next November, when hopefully we can be there with them. I'll try not to mess them up again.
I hope to have some real information for the blog tomorrow. It will feel better I think, to really know the plan. I know there is more to be done. I just want to heal well, and then get on with it!
Monday, March 2, 2009
SLEEP
I can't seem to get enough sleep these days. I didn't know I had built up such a deficit. I no sooner get up and I am thinking about going back to sleep again. Must be HIBERNATION MODE. The weather really hasn't been that bad, cold but lots of sun. I really should be finding something more interesting to do than sleep.
I know that the Monet "Art of the day ", in this blog are likely depicting France, but once again today, the sunny patio, makes me think of Mexico. We are hoping to be sitting there later this week. I better get some energy up soon. I am healing very well, and I am decreasing the pain medication right down today. Maybe then I will wake up.
I know that the Monet "Art of the day ", in this blog are likely depicting France, but once again today, the sunny patio, makes me think of Mexico. We are hoping to be sitting there later this week. I better get some energy up soon. I am healing very well, and I am decreasing the pain medication right down today. Maybe then I will wake up.
Sunday, March 1, 2009
Sunny but Cold
Another day of sun and cloud mixed in Lewiston New York. For a February Day in this climate, it is perfect. We are working away on the great bedroom redecorating project and fielding e-mails from friends in exotic places.
It seems that the Taylors have fallen prey to the seductions of Mexico, and are extending their stay in paradise by three more weeks. Hopefully that will allow us the opportunity to spend some time with them there soon. We are thrilled that they are having such a wonderful time. The pictures MaryAnn has taken look wonderful, and her recounting of time spent with mutual friends, has us feeling nostalgic about all we have missed. We are very happy to have been instrumental in them finding an alternate life that they find so satisfying. I hope their children will forgive us.
We are keeping busy while waiting for our Appointment with the Doctor on Wednesday. Cameron and Jessica joined us for dinner last night, and we will be seeing them again tonight for dinner as well. We are all hoping that their offer on a house in Niagara Falls will be accepted. We are all excited about having a new project, and have many ideas for the house. It has been great reviewing houses with them and a bonus for us being here to assist while not in Mexico. There is always a silver lining!
We are looking forward to our family time in Mexico in May for Reagan and Bing's wedding. That will be here before we know It!
It seems that the Taylors have fallen prey to the seductions of Mexico, and are extending their stay in paradise by three more weeks. Hopefully that will allow us the opportunity to spend some time with them there soon. We are thrilled that they are having such a wonderful time. The pictures MaryAnn has taken look wonderful, and her recounting of time spent with mutual friends, has us feeling nostalgic about all we have missed. We are very happy to have been instrumental in them finding an alternate life that they find so satisfying. I hope their children will forgive us.
We are keeping busy while waiting for our Appointment with the Doctor on Wednesday. Cameron and Jessica joined us for dinner last night, and we will be seeing them again tonight for dinner as well. We are all hoping that their offer on a house in Niagara Falls will be accepted. We are all excited about having a new project, and have many ideas for the house. It has been great reviewing houses with them and a bonus for us being here to assist while not in Mexico. There is always a silver lining!
We are looking forward to our family time in Mexico in May for Reagan and Bing's wedding. That will be here before we know It!
Saturday, February 28, 2009
Technicolor
Another day in the healing process going well. The impressive bruising is already fading, and the three incisions healing very well. Dr Edge does good work. I am pleased with my decision to have breast conserving surgery. I know my activity would be much more limited for much longer, had I opted for mastectomy and reconstruction. I am very lucky that the tumor was found early enough to give me that option. Now the next question is further treatment. The radiation will proceed in about 6 weeks as part of the lumpectomy decision. The question of chemo or not will be addressed on Wednesday, with Dr Tracey O'Connor, my medical oncologist. The ball is in her court now. She has just returned from vacation, so I was very lucky that Dr Edge got me fit in to her schedule so promptly. The decision is a bit of a gray area, because the size of the tumor is small and the lymph nodes clear, but because it is ER negative cancer and a different kind of cancer than I had before, that puts the meter towards chemo. It is a grade three, which is aggressive, so I'm thinking chemo may be necessary. I guess I have thought this all along actually, so it will be a bonus, if she feels it isn't required at this time. We are hoping we get to go back to Mexico before radiation, but We are hearing chemo might start sooner than we thought, so everything is up in the air until WEDNESDAY!The sun has been shining regularly but it is cold. I think Ron and I have become resigned to winter since we have been trapped here by circumstance. Can always be worse!
Friday, February 27, 2009
February 27
Had a pretty good day yesterday, with an outing for breakfast to my friend Debbie's lovely restaurant, "Knead the Dough", in Ransomville. Then to Strong Memorial Hospital to visit my friend Marty's husband Terry, in the heart transplant unit.
While on the drive back we talked to Dr Edge, who told us the results of the pathology report. The tumor was 8mm, quite small and with no spread to lymph nodes and clear margins. All good, but with it being ER negative cancer, apparently it is still a "gray" area for needing chemo or no. Chemo would be done before radiation and all that is up to the medical oncologist. We are waiting to be given an appointment. There seems to be no way to speed things up. We are hostage.
I find this very frustrating waiting, but when I think of the people waiting in the transplant unit for their lives to begin again, I feel ashamed of my impatience.
While on the drive back we talked to Dr Edge, who told us the results of the pathology report. The tumor was 8mm, quite small and with no spread to lymph nodes and clear margins. All good, but with it being ER negative cancer, apparently it is still a "gray" area for needing chemo or no. Chemo would be done before radiation and all that is up to the medical oncologist. We are waiting to be given an appointment. There seems to be no way to speed things up. We are hostage.
I find this very frustrating waiting, but when I think of the people waiting in the transplant unit for their lives to begin again, I feel ashamed of my impatience.
Wednesday, February 25, 2009
February 25
Now it is 48 hours post surgery, and I got to have a shower and wash my hair. What Pleasure. I really feel good today. I had a good sleep last night because I cut down on the pain pills, that were making me pretty high, and took a little benadryl. I had only dozed a couple of hours yesterday, since surgery, and was getting pretty wound up by yesterday afternoon. Those are pretty good drugs they gave me!! The incisions look great and although I have some pretty impressive bruising, I know that will soon be gone and replaced by a nice tan. What could be better than that??
Still no firm schedule for Mexico, but I am hoping for Monday or Tuesday of next week. I think that is quite doable. Ron is also feeling much better today. Thank you all, for your kind thoughts. If I missed replying to anyone, please try again and we will blame the drugs! I was more "out to lunch" than ususal yesterday.
Still no firm schedule for Mexico, but I am hoping for Monday or Tuesday of next week. I think that is quite doable. Ron is also feeling much better today. Thank you all, for your kind thoughts. If I missed replying to anyone, please try again and we will blame the drugs! I was more "out to lunch" than ususal yesterday.
Monday, February 23, 2009
Further to Feb 23
Yes I feel a little wound up! I wanted to point out to you the Monet Art of the day. I was thinking it should be the famous bridge picture we all know , but I remember we have already seen that one. This is a painting I am not familiar with at all, but I really love it. Although not a bridge, it is a lovely path; doesn't that look like Mexico in the distance? and the steps of a pyramide? Okay, maybe I am hallucinating just a little. But I wanted you to see through my eyes!
February 23
Yes, I am alert, and a little high on prescription drugs and on how well I feel. No wonder the druggies like that hydrocodone! I am not even sleepy. Anyone feel like going out to salsa??? My throat isn't even sore because they used such a small breathing tube!
Ron is sleeping off the stress. He had a difficult night and a visit to ER this morning with sawdust stuck in his eye. I tried to help him in the morning, but he didn't wake me when he started having trouble about 2:30 this morning, and when he did we had barely enough time to dress and get to the hospital for 7:30. It required professional help anyway though.
I have a couple of small incisions, no big deal. They only had to sample two lymph nodes this time and they were CLEAR. Another bridge has been crossed successfully. And I am quite confident that it is the bridge to Mexico we just crossed. I am so happy about my decision on surgery type. I don't have to change my whole wardrobe!! I am having a little trouble typing though, and perhaps the judgement centers of my frontal lobe are a little impaired, so perhaps I should go have a nap now, before I say something to embarass us all. Oh, the temptation to be outrageous!
Ron is sleeping off the stress. He had a difficult night and a visit to ER this morning with sawdust stuck in his eye. I tried to help him in the morning, but he didn't wake me when he started having trouble about 2:30 this morning, and when he did we had barely enough time to dress and get to the hospital for 7:30. It required professional help anyway though.
I have a couple of small incisions, no big deal. They only had to sample two lymph nodes this time and they were CLEAR. Another bridge has been crossed successfully. And I am quite confident that it is the bridge to Mexico we just crossed. I am so happy about my decision on surgery type. I don't have to change my whole wardrobe!! I am having a little trouble typing though, and perhaps the judgement centers of my frontal lobe are a little impaired, so perhaps I should go have a nap now, before I say something to embarass us all. Oh, the temptation to be outrageous!
February 23 STEP 1 - Surgery is behind us!
From the recovery room - the surgery is over and everything went well. Dee is alert and in good spirits. More to follow later.
Sunday, February 22, 2009
February 22 Sunday
Okay, Okay, so I have a small hangover today. Lets hope I have a good liver. Those Barley's are such good company, and we had a nice dinner on Saturday, that went on a ways in to Sunday.
We were up and out early Sunday morning to Lockport to review a couple of houses, with Cameron and Jessica, back home for Breakfast with Paul and Sharon, and back to bed for a few hours. Not a real productive day, but it was a good one and passes the time!
Ron is still suffering from sinus problems, despite still being on antibiotics. He has been fighting a mighty sinus headache, but, unlike mine, not because of wine. Tonight he is feeling somewhat better, and I hope it will be okay for him tomorrow. We need to be at the hospital at 7:30. The day could be a little long for him, but they will have some good drugs for me.
What a lovely winter sunset it was tonight, the snow tinged rose and blue. The sky was a brilliant orange, blue, rose/lavender and purple. What a picture it made. I don't mind looking at the scenery from inside, where it is warm. Early this morning it was a bit of a blizzard for awhile, but spring is coming. The sun is getting pretty strong. There are good ice conditions on Lake Muskoka for snowmobiling, for Chuck and MaryAnne's return. But, I think I'll just wait in Mexico for spring.
I made a couple of big pots of soup tonight that should last us a few days if no-one feels like cooking. Soup is so simple, and great for hangovers!
I need to get packed for the hospital!
We were up and out early Sunday morning to Lockport to review a couple of houses, with Cameron and Jessica, back home for Breakfast with Paul and Sharon, and back to bed for a few hours. Not a real productive day, but it was a good one and passes the time!
Ron is still suffering from sinus problems, despite still being on antibiotics. He has been fighting a mighty sinus headache, but, unlike mine, not because of wine. Tonight he is feeling somewhat better, and I hope it will be okay for him tomorrow. We need to be at the hospital at 7:30. The day could be a little long for him, but they will have some good drugs for me.
What a lovely winter sunset it was tonight, the snow tinged rose and blue. The sky was a brilliant orange, blue, rose/lavender and purple. What a picture it made. I don't mind looking at the scenery from inside, where it is warm. Early this morning it was a bit of a blizzard for awhile, but spring is coming. The sun is getting pretty strong. There are good ice conditions on Lake Muskoka for snowmobiling, for Chuck and MaryAnne's return. But, I think I'll just wait in Mexico for spring.
I made a couple of big pots of soup tonight that should last us a few days if no-one feels like cooking. Soup is so simple, and great for hangovers!
I need to get packed for the hospital!
Saturday, February 21, 2009
February 20
Not too much new to share today. Thanks for all your messages of encouragement! I am mentally and I hope, physically ready for surgery on Monday. I even stopped drinking! (almost). No Ibuprofen for 6 weeks or more, and very little Tylenol. My liver should be able to handle a few drugs. The great bedroom remodel project is nearly done. We're ready.
Thursday, February 19, 2009
February 19, POSITIVE BLOGATIVE
This is the best day I have had since the last Biopsy report. No, even better, because this one is for real benign, not even a radial needing excision, just plain old benign. So that leaves one breast cancer already identified and one radial scar to add to the lumpectomy surgery. No Mastectomy!
No problem, we can deal with this. Monday, Feb 23, is the day; I will find out the time tomorrow, but that doesn't even matter because I didn't have any other plans for Monday anyway.
We'll have to do our own Carnaval parade on Saturday night. I can have pancakes on Tuesday if I want.
I'm already too late for MaryAnn and Allan's wonderful dinner party. We hope to be back in time to have some adventures with Chuck and MaryAnne before they head back to winter on March 3.
Dr Edge probably had some plans for Monday, but he is generously giving up his day off to try to get us on our way back to Mexico
Anyone else out there tired of winter? The bus is leaving soon!
I need to get started on my Mexican Radiation program. "Careful Vitamin D Acquisiton on the Playa Desnudo"(Casa Margarita's roof). Vitamin D is a potent anti-carcinogen. I like this PLAN!
No problem, we can deal with this. Monday, Feb 23, is the day; I will find out the time tomorrow, but that doesn't even matter because I didn't have any other plans for Monday anyway.
We'll have to do our own Carnaval parade on Saturday night. I can have pancakes on Tuesday if I want.
I'm already too late for MaryAnn and Allan's wonderful dinner party. We hope to be back in time to have some adventures with Chuck and MaryAnne before they head back to winter on March 3.
Dr Edge probably had some plans for Monday, but he is generously giving up his day off to try to get us on our way back to Mexico
Anyone else out there tired of winter? The bus is leaving soon!
I need to get started on my Mexican Radiation program. "Careful Vitamin D Acquisiton on the Playa Desnudo"(Casa Margarita's roof). Vitamin D is a potent anti-carcinogen. I like this PLAN!
Wednesday, February 18, 2009
February 18
Enjoyed a nice dinner out with friends last evening in Oakville. It was wonderful to catch up a little with Brian and Carmel and Avril and Steve. We hope to see Avril and Steve in Yucatan in March, and are working on Brian and Carmel to join us there too!
Today the snow started again and it is overcast. I miss the sun as soon as it is gone, although it has been pretty good for sunshine this year. MaryAnn tells me that reports from Muskoka say the lake is a giant skating rink, smooth ice everywhere. Not the best conditions for snowmobiling. She is planning on being back up there soon after March 3. Hope the ice holds for that. I hope to be in Merida, shortly after March 3!
Today the snow started again and it is overcast. I miss the sun as soon as it is gone, although it has been pretty good for sunshine this year. MaryAnn tells me that reports from Muskoka say the lake is a giant skating rink, smooth ice everywhere. Not the best conditions for snowmobiling. She is planning on being back up there soon after March 3. Hope the ice holds for that. I hope to be in Merida, shortly after March 3!
Tuesday, February 17, 2009
February 17
Another day, another biopsy behind me. At Roswell for 9:00 am after a nice breakfast in Buffalo. I.V. started with my help, Sarah seems a little inexperienced, gave her some of my I.V. starting secrets. "I hate being the patient. Liked being the nurse better." They had told me that some anti-anxiety medication would be available, no problem, but that seemed to be out of the ordinary for them. We stuck to our request, and got a little pill, (maybe placebo) There seemed to be a little bit of a feeling to it. Like one drink maybe. Maybe next time I'll have the drink! At least I didn't get the shakes and a big blood pressure drop, this time. Procedure seemed quicker this time and the compression less uncomfortable. Keeping that still is difficult though, and my ribs get very sore, laying like that. Came home and ate lunch and slept all afternoon. Tonight we have a dinner out with friends in Burlington. Hope I can stay awake. Sleep=oblivion, I like it there. About two days and we should finally know the game plan.
Monday, February 16, 2009
February 16
It was a great weekend with the family. On Friday, I spent some time with my daughter-in-law, Jessica, did some shopping for Valentines Day and got ready for Reagan's visit. When I got back home, Mom Poland was there and we had tea, and planned the weekend.
On Saturday, Tyler and Amy and the children came for a visit. We planned a lunch, and ate together, when Reagan arrived with Cameron and Jessica. It was a late lunch because Reagan's flight was delayed. She was pretty tired but looked wonderful to her mother. We missed Bing as he is away in the Phillipines, on a mission doing Facial Surgeries. Unfortunately, Bing was suffering from a nasty virus when he left and feeling pretty rough. I hope that he is feeling better now.
Ron got me a wonderful teak porch rocker for Daisy Island for Valentines day, some beautiful balloons and some toy goats. I wonder what it means when you get a rocker for Valentines Day instead of lingerie though???? (Editors Note: We understand that your partner thought the rocking chair would be the perfect complement for the vegetable slicer and tablecloth he recieved from you for Valentines Day. He reportedly felt that the romantic part of the gift was the hand-held portable full-length mirror, the heavilly plagiarized poem about personal livestock and the Kama Sutra bi-modal sheep-goats he had given you along with the rocker. No offence was apparently intended in not gifting lingerie). For dinner Ron cooked live lobsters and steak. It was just great. Tristan and Makenna, were quite fascinated with the whole process. They preferred to eat the steak though, as more familiar to them. Cameron and Jessica brought me some wonderful yellow roses, my favorite flowers that always remind me of my mother.
On Sunday morning, Ron and I, Reagan and Nana, went out to look at two houses with Cameron and Jessica ,which they were considering. We all enjoyed the exercise and Reagan was very interested in the process of assessing houses and what to look for. Ron and I shared with them our extensive experience at house hunting, and offered to look for a house in Texas for Reagan. Maybe one with an in-law suite. We also pointed out that we learned a lot from our mistakes in house buying, like once having bought a house without realizing that it had not a single closet in the entire house.
Later in the day, we gathered at home, had some lunch, and then Barb, Laura and Sarah Winberg arrived. Tyler and Amy were unable to join us for the afternoon. Barbara, Laura and Sarah gave us valuable lessons in the making of Sushi. We had a wonderful, fun time making and eating sushi before having a dinner of ham and scalloped potatoes. Ron was feeling the need for a long siesta, so missed a lot of the making process, but was available for the eating part. We were very sorry that Tyler and Amy and the children missed such a good time. Laura and Jessica met for the first time in person, and everyone enjoyed a good visit.
On Monday, Ron and I got up very early and took Reagan to the airport for her return flight to California. Monday was a fairly quiet day, trying to get organized for Biopsy Day tomorrow.
Now we are watching a program on lobotomy. Makes me feel pretty lucky today.
On Saturday, Tyler and Amy and the children came for a visit. We planned a lunch, and ate together, when Reagan arrived with Cameron and Jessica. It was a late lunch because Reagan's flight was delayed. She was pretty tired but looked wonderful to her mother. We missed Bing as he is away in the Phillipines, on a mission doing Facial Surgeries. Unfortunately, Bing was suffering from a nasty virus when he left and feeling pretty rough. I hope that he is feeling better now.
Ron got me a wonderful teak porch rocker for Daisy Island for Valentines day, some beautiful balloons and some toy goats. I wonder what it means when you get a rocker for Valentines Day instead of lingerie though???? (Editors Note: We understand that your partner thought the rocking chair would be the perfect complement for the vegetable slicer and tablecloth he recieved from you for Valentines Day. He reportedly felt that the romantic part of the gift was the hand-held portable full-length mirror, the heavilly plagiarized poem about personal livestock and the Kama Sutra bi-modal sheep-goats he had given you along with the rocker. No offence was apparently intended in not gifting lingerie). For dinner Ron cooked live lobsters and steak. It was just great. Tristan and Makenna, were quite fascinated with the whole process. They preferred to eat the steak though, as more familiar to them. Cameron and Jessica brought me some wonderful yellow roses, my favorite flowers that always remind me of my mother.
On Sunday morning, Ron and I, Reagan and Nana, went out to look at two houses with Cameron and Jessica ,which they were considering. We all enjoyed the exercise and Reagan was very interested in the process of assessing houses and what to look for. Ron and I shared with them our extensive experience at house hunting, and offered to look for a house in Texas for Reagan. Maybe one with an in-law suite. We also pointed out that we learned a lot from our mistakes in house buying, like once having bought a house without realizing that it had not a single closet in the entire house.
Later in the day, we gathered at home, had some lunch, and then Barb, Laura and Sarah Winberg arrived. Tyler and Amy were unable to join us for the afternoon. Barbara, Laura and Sarah gave us valuable lessons in the making of Sushi. We had a wonderful, fun time making and eating sushi before having a dinner of ham and scalloped potatoes. Ron was feeling the need for a long siesta, so missed a lot of the making process, but was available for the eating part. We were very sorry that Tyler and Amy and the children missed such a good time. Laura and Jessica met for the first time in person, and everyone enjoyed a good visit.
On Monday, Ron and I got up very early and took Reagan to the airport for her return flight to California. Monday was a fairly quiet day, trying to get organized for Biopsy Day tomorrow.
Now we are watching a program on lobotomy. Makes me feel pretty lucky today.
Wednesday, February 11, 2009
February 11....continued
I have just heard from Karen Furlani, NP, that Dr Edge has "penciled" me in his schedule for Monday, Feb 23. This is not his surgery day normally, but as I explained to the nurse practitioner, I was promised by Dr Edge that this error made by their department to not deal with everything in the biopsy on Feb 5, would not result in unnecessary delay in my treatment.
Which is why I was upset when told that I would not be booked for surgery until after the results were in from the biopsy and it takes several weeks to fit me in to the schedule, after that. It appears Dr Edge did not forget his promise, but apparently no-one else knew that, including me. There still could be a change again, if I need mastectomy after all, as the surgeon who does the reconstruction is not available that day. But I guess I'll have to cross that bridge if I get there. At least I have a tentative date now.
Which is why I was upset when told that I would not be booked for surgery until after the results were in from the biopsy and it takes several weeks to fit me in to the schedule, after that. It appears Dr Edge did not forget his promise, but apparently no-one else knew that, including me. There still could be a change again, if I need mastectomy after all, as the surgeon who does the reconstruction is not available that day. But I guess I'll have to cross that bridge if I get there. At least I have a tentative date now.
February 11.....continues....
It is raining all day. Soon I can look at a sea of mud and dead grass instead of snow. A small improvement!
They are still trying to treat me like a simple patient. Got to Dr Edge's Nurse practitioner and got the same story about the way things are done, and why I should be patient with all this. Surgery not scheduled until after the biopsy, Blah Blah Blah,! After I walked her through the history, I think she may have got some of it, but quoted a low risk of radial scar being cancer, which I corrected her on from two studies, that showed 16% and 30%. Not my kind of odds, even if I was a gambler. Then, tried to convince me that my cancer isn't likely changing much while all this waiting goes on.
The way I see it, I am skating close to the line on needing chemo or not needing chemo, and I don't like those odds being F****** with. Go ahead and tell me how long it takes a given cancer to grow from .6cm to 1.0 cm, when it may have changed from .6 to .8 in three weeks. (May or may not be camera angle) Maybe I'm not supposed to read these things they give me and really think about them????
P.S. I think a new summer hat is a good idea. Looks like I am going to really need one or two, too. Couldn't resist Two, Too.
Might be time to turn in to my alter ego that my kids would recognize: "Attila, the MOM" (their name for me when their efforts at getting justice, were not satisfied, and the heavy was needed.) I don't like being held hostage, I want a DATE!!!!
Dr Edge is to call tonight or tomorrow. He promised me a date soon after the biopsy, even if he had to do it on his day off. I don't intend to wait until I am told on the 19 when I get the results that he is out of town for college visits with his daughter. I already know he is going to be out of town on Feb 19, as that is when my post-op visit was originally scheduled back when I was having surgery today.
What am I to do with these feelings? To quote my niece Jennifer, many years ago. "Lets go out in the Woods and Kill Something". She was about 8 or 10 I think. Poor Ron, He doesn't know what to do with me, because he's upset too!
They are still trying to treat me like a simple patient. Got to Dr Edge's Nurse practitioner and got the same story about the way things are done, and why I should be patient with all this. Surgery not scheduled until after the biopsy, Blah Blah Blah,! After I walked her through the history, I think she may have got some of it, but quoted a low risk of radial scar being cancer, which I corrected her on from two studies, that showed 16% and 30%. Not my kind of odds, even if I was a gambler. Then, tried to convince me that my cancer isn't likely changing much while all this waiting goes on.
The way I see it, I am skating close to the line on needing chemo or not needing chemo, and I don't like those odds being F****** with. Go ahead and tell me how long it takes a given cancer to grow from .6cm to 1.0 cm, when it may have changed from .6 to .8 in three weeks. (May or may not be camera angle) Maybe I'm not supposed to read these things they give me and really think about them????
P.S. I think a new summer hat is a good idea. Looks like I am going to really need one or two, too. Couldn't resist Two, Too.
Might be time to turn in to my alter ego that my kids would recognize: "Attila, the MOM" (their name for me when their efforts at getting justice, were not satisfied, and the heavy was needed.) I don't like being held hostage, I want a DATE!!!!
Dr Edge is to call tonight or tomorrow. He promised me a date soon after the biopsy, even if he had to do it on his day off. I don't intend to wait until I am told on the 19 when I get the results that he is out of town for college visits with his daughter. I already know he is going to be out of town on Feb 19, as that is when my post-op visit was originally scheduled back when I was having surgery today.
What am I to do with these feelings? To quote my niece Jennifer, many years ago. "Lets go out in the Woods and Kill Something". She was about 8 or 10 I think. Poor Ron, He doesn't know what to do with me, because he's upset too!
February 11
This was to be my surgery day, and I am so frustrated that I still do not know the day that this will be dealt with. I have another call in to my surgeon because now the office is telling me that I won't have a surgery date given until Feb 19, after the biopsy result. That would put me three plus more weeks beyond Feb 19 potentially, and I find that quite distressing.
I feel like I have been living with this knowledge too long already. I need this to be dealt with now. Anyone interested could look at "Radial Scar, Breast" on the net. It explains why this must be dealt with this way, but it should have been thought of before I asked them how they would find the other spot, when there was only a clip at one of the two. The ball has been dropped and it is rolling away.
I feel like I have been living with this knowledge too long already. I need this to be dealt with now. Anyone interested could look at "Radial Scar, Breast" on the net. It explains why this must be dealt with this way, but it should have been thought of before I asked them how they would find the other spot, when there was only a clip at one of the two. The ball has been dropped and it is rolling away.
Tuesday, February 10, 2009
February 10,
Well as this day ends, I am trying to be more philosophical about what has happened. After all what are we really talking about. Only a few more weeks...... in this disgusting climate, having disgusting procedures, waiting for a disgusting surgery, for a disgusting reason. But" IT COULD BE WORSE! " In the words of Igor "Young Frankenstein". " It could be raining...." or fill in the blanks. Worse, would have been asking the question, after it was already too late to go back, and do it right.
So our return is delayed, Reagan is still coming for a visit. The sun will come up and go down. The procedure will be survived, and I will likely still get the type of surgery I am hoping for. I just want to get this behind me and get off of "Pause" The next biopsy will be Feb 17. I do not yet have a surgery date.
Well as this day ends, I am trying to be more philosophical about what has happened. After all what are we really talking about. Only a few more weeks...... in this disgusting climate, having disgusting procedures, waiting for a disgusting surgery, for a disgusting reason. But" IT COULD BE WORSE! " In the words of Igor "Young Frankenstein". " It could be raining...." or fill in the blanks. Worse, would have been asking the question, after it was already too late to go back, and do it right.
So our return is delayed, Reagan is still coming for a visit. The sun will come up and go down. The procedure will be survived, and I will likely still get the type of surgery I am hoping for. I just want to get this behind me and get off of "Pause" The next biopsy will be Feb 17. I do not yet have a surgery date.
February 10 . . . A Major Frustration
Yesterday's jubilation was short-lived. I received a call from Dr. Edge today. My medical team at Roswell conferred last night and collectively decided that more testing is warranted before surgery. The "radial scars" (term for the other growths under investigation) can be problematic. The new dates for testing and surgery are unknown. This is not likely to change the outcome, but may alter the nature of the surgery and treatment, and will certainly alter the date on which I can resume life as I knew it before December.
And so I find myself in limbo again - ready, no, desperately wanting to proceed, but deferring to the insight and judgement of the experts in whose hands I place my body. If patience is a virtue, I am less virtuous today.
And so I will place my life on hold for an indeterminate time. I will keep you posted as I learn more.
Yesterday's jubilation was short-lived. I received a call from Dr. Edge today. My medical team at Roswell conferred last night and collectively decided that more testing is warranted before surgery. The "radial scars" (term for the other growths under investigation) can be problematic. The new dates for testing and surgery are unknown. This is not likely to change the outcome, but may alter the nature of the surgery and treatment, and will certainly alter the date on which I can resume life as I knew it before December.
And so I find myself in limbo again - ready, no, desperately wanting to proceed, but deferring to the insight and judgement of the experts in whose hands I place my body. If patience is a virtue, I am less virtuous today.
And so I will place my life on hold for an indeterminate time. I will keep you posted as I learn more.
Monday, February 9, 2009
February 9 And the winner is . . .
I just got off the phone with Dr. Edge, and I've won the consolation prize. The new areas sampled by biopsy last week are not cancer!!!!!! The only cancer is the tumor already identified and scheduled for removal this Wednesday.
For the sake of completeness and to assure they never give me trouble in the future, Dr. Edge will remove the additional tissue in the areas during the surgery, but the procedure will be a lumpectomy,with sentinel lymph node biopsy, not a mastectomy. I am very pleased with this result. I am happy to be elegible for the least invasive surgery possible, followed by a course of radiation, and hopefully a quick recovery in the Yucatan Sun.
I just got off the phone with Dr. Edge, and I've won the consolation prize. The new areas sampled by biopsy last week are not cancer!!!!!! The only cancer is the tumor already identified and scheduled for removal this Wednesday.
For the sake of completeness and to assure they never give me trouble in the future, Dr. Edge will remove the additional tissue in the areas during the surgery, but the procedure will be a lumpectomy,with sentinel lymph node biopsy, not a mastectomy. I am very pleased with this result. I am happy to be elegible for the least invasive surgery possible, followed by a course of radiation, and hopefully a quick recovery in the Yucatan Sun.
Friday, February 6, 2009
Another day . . another sample
February 5
Another day with my helpers at Roswell! We went early to the MRI suite, for another core biopsy procedure by Dr Lori Scorza. The target was very tiny so the procedure involved my being clamped securely by my left breast into a table that could be moved in and out of the MRI machine. That looks like a windy tunnel, for those of you who have not had the pleasure of meeting this machine. The table was equipped with plastic plates like a mammogram machine, (we older ladies should all be familiar with this torture devise). The only difference is that you are on your face in the table, and one of the plates has a grid on it through which the biopsy sample is taken, when the MRI has determined the placement of the needle is correct.
I think Dr Scorza is very good at what she does, and exudes the confidence typical of a high acheiver! She reminded me a lot of my daughter actually. She was very kind and her part of the job was quite quick. All together is was about one and a half hours clamped in the table, instructed not to move a muscle. So who could move anyway??? It doesn't hurt that much, as after about 15 min, you are quite numb anyway. There was a little bruising, but not that much discomfort afterwards. I did get quite chilled and shaky after I got finished for awhile. I guess my body felt a little assaulted.
Ron was a wonderful support to me, through all this, sleeping in a chair in the waiting room, suffering through the last days of his cold, I hope. I don't know what I would do without him.
Now it is just to try to keep busy, while I wait for the word on the results on Monday. This will be the basis on which I decide the extent of the surgery I will have next Wednesday.
Another day with my helpers at Roswell! We went early to the MRI suite, for another core biopsy procedure by Dr Lori Scorza. The target was very tiny so the procedure involved my being clamped securely by my left breast into a table that could be moved in and out of the MRI machine. That looks like a windy tunnel, for those of you who have not had the pleasure of meeting this machine. The table was equipped with plastic plates like a mammogram machine, (we older ladies should all be familiar with this torture devise). The only difference is that you are on your face in the table, and one of the plates has a grid on it through which the biopsy sample is taken, when the MRI has determined the placement of the needle is correct.
I think Dr Scorza is very good at what she does, and exudes the confidence typical of a high acheiver! She reminded me a lot of my daughter actually. She was very kind and her part of the job was quite quick. All together is was about one and a half hours clamped in the table, instructed not to move a muscle. So who could move anyway??? It doesn't hurt that much, as after about 15 min, you are quite numb anyway. There was a little bruising, but not that much discomfort afterwards. I did get quite chilled and shaky after I got finished for awhile. I guess my body felt a little assaulted.
Ron was a wonderful support to me, through all this, sleeping in a chair in the waiting room, suffering through the last days of his cold, I hope. I don't know what I would do without him.
Now it is just to try to keep busy, while I wait for the word on the results on Monday. This will be the basis on which I decide the extent of the surgery I will have next Wednesday.
Thursday, January 29, 2009
January 29 - the Day of Reckoning!
And now we have all the information! . . . Well, not quite. It seems that the MRI has given my right breast the Good Breastkeeping Seal of Approval, but the left, the left appears to have a couple of blemishes. As it was explained to me, ' the good thing about MRI is that it shows everything . . . , the bad thing about MRI is that it shows everything'. That is to say, the fact that there is something there does not mean it is more cancer, but when you're dealing with a research facility like Roswell Park, all unexplained artifacts are presumed cancerous until proven otherwise. So to preserve my right to choose, and to have the least invasive surgery advisable, I will have another biopsy procedure, this time an MRI guided core biopsy. I'm getting to meet all of the scary machines. I will have this done on Feb 5, and will get the result on Feb 9 by telephone from Dr Edge, and the surgery will proceed as scheduled on Feb11. I am all prepared for surgery, the only question is the extent. I am still a candidate for lumpectomy/radiation if the biopsy of the newly discovered spots is benign. The condition of my other breast ,as completely clear is heartening. It also looks like I am likely to have a window of time to return to Mexico for about 4 weeks before further treatment if any is needed after surgery. There is still a lot we won't know until after surgery.
And now we have all the information! . . . Well, not quite. It seems that the MRI has given my right breast the Good Breastkeeping Seal of Approval, but the left, the left appears to have a couple of blemishes. As it was explained to me, ' the good thing about MRI is that it shows everything . . . , the bad thing about MRI is that it shows everything'. That is to say, the fact that there is something there does not mean it is more cancer, but when you're dealing with a research facility like Roswell Park, all unexplained artifacts are presumed cancerous until proven otherwise. So to preserve my right to choose, and to have the least invasive surgery advisable, I will have another biopsy procedure, this time an MRI guided core biopsy. I'm getting to meet all of the scary machines. I will have this done on Feb 5, and will get the result on Feb 9 by telephone from Dr Edge, and the surgery will proceed as scheduled on Feb11. I am all prepared for surgery, the only question is the extent. I am still a candidate for lumpectomy/radiation if the biopsy of the newly discovered spots is benign. The condition of my other breast ,as completely clear is heartening. It also looks like I am likely to have a window of time to return to Mexico for about 4 weeks before further treatment if any is needed after surgery. There is still a lot we won't know until after surgery.
Wednesday, January 28, 2009
January 26
OK, another test, this time a bilateral MRI. But the schedule is certainly different, 9:45 PM - I didn't even roswell diagnostics were open then. Ron drove me to Roswell and had his choice of parking spots. The building was empty, not the usual sea of humanity, sounds and interaction. Sean, the technician operating the MRI unit, is sweet and solicitous, overly concerned about me not flashing my (temporary? Dog, I hope not!) boobs between setups. All I have to do is lay in Superman airborne position for 45 minutes and will any warts, toad droppings or tumors (other than the one I already know about) out of existnece.
I'll know if it worked come Thursday.
And now for something completley differrent . . . trying for two days to forget that any of this is going on.
OK, another test, this time a bilateral MRI. But the schedule is certainly different, 9:45 PM - I didn't even roswell diagnostics were open then. Ron drove me to Roswell and had his choice of parking spots. The building was empty, not the usual sea of humanity, sounds and interaction. Sean, the technician operating the MRI unit, is sweet and solicitous, overly concerned about me not flashing my (temporary? Dog, I hope not!) boobs between setups. All I have to do is lay in Superman airborne position for 45 minutes and will any warts, toad droppings or tumors (other than the one I already know about) out of existnece.
I'll know if it worked come Thursday.
And now for something completley differrent . . . trying for two days to forget that any of this is going on.
Monday, January 26, 2009
It's already a month since this all began; let me bring you up to date . . .
December 26, 2008
After a whirlwind Christmas between sojourns to Mexico, it was time for my annual date with the mammogram at Roswell Park Cancer Institute. To my dismay, Dr. Kumar thought he detected an area of changed tissue density. An immediate ultrasound confirmed a suspicious mass, and I was told I needed a biopsy ASAP. I was to leave for Mexico three days later! What could be done? The Mammogram technician checked the schedule and conferred with Dr Kumar and since I had the good fortune to be the only client booked for that afternoon, the day after Christmas, they would do the biopsy for me that day! What a team. I got to go to Mexico and wait for the news to come by telephone on Dec 30.
December 29, 2008
In the spirit of the "all-nighter" we piloted the rented Mercury from Lewiston to Detroit overnight, picking up our friends Chuck & Maryann Taylor enroute. We travelled late under the guise of not wanting to complicate our lives with a hotel stay (but actually because we just ran out of time to do everyhting we needed to before departure). We arrived at the airport long before the airline staff who were would eventually check us in.
December 30, 2008
Our flight to Cancun was uneventful, perhaps because we slept much of the way. We picked up our Jeep from the Marriott hotel and headed west. Shortly after crossing into the state of Yucatan, we stopped at our friend's restaurant to introduce Chuck and Mary Ann to pollo al carbon, one of our favourite local meals. . .
I went out into the street for privacy, but of course the traffic noise was intense. Dr Kumar's soft voice gently told me the news that I had a new primary breast cancer, ER negative, in my left breast. This was shocking to me, as I was prepared for the news of cancer again, as I know that Dr Kumar is good at his job, and wouldn't just scare me for nothing, but I was very surprised to know that the cancer was a different animal, my previous tumor being ER positive. Which explained why taking Tamoxifen didn't protect me from it. Ron came outside to receive the news, and help me get myself back inside to deliver the bad news to my friends. What a downer for everyone, when we were all so excited to be in Mexico. We drove to our hacienda, Sta Ines, to drop some luggage off and pick up some different clothes for a few days in Merida, checked on the sheep, and after arriving in time to witness our caretaker bathing in the courtyard sheep tankand observe his lack of tan lines. We took a diversion down the road to the guest casas to give Antonio time to dress. We only stayed a short while before continuing in to Merida. I was feeling very sad because I didn't really want to leave Santa Ines. We got to Merida and took the Taylors to their hotel for check in and went to the house on Calle 49 for a little rest. We got together later for food I think.
Dec 31, New Years Eve,
We had a wonderful evening at Carlos' house on Calle 59 with the Taylors, Juan Pablo Bavio and wife Cecelia, Nari, and her friend (?). As usual the beef was superb, and so were the salads and wine. I received lots of positive wishes for my recovery. We went up on the roof at midnight to watch fireworks all over the city of Merida. It was really lovely
Jan 1, New Years Day, and my 56th Birthday!
We had a great day including going back to Carlos house for more grilled beef and salads. What an incredible feast. Norman and Judy Miller were able to join us later at Amaro, our favorite restaurant in Merida, for my birthday party. Also present were Fred and Marie, Mary Ann and Chuck, Carlos, Juan Pablo and Ron. Enrique, one of the waiters had bought me a cake, and the entertainer sang Happy Birthday to me. The entire restaurant was served a little piece of cake. Ron and I had our picture taken with the owner of the restaurant, who always visits with us in Spanish when we go in, but we discovered she speaks very good English, in deference to our English-speaking friends. I had a nice little salsa dance with Enrique. All of the waiters were involved in wishing me a happy birthday and Feliz Ano. It was nearly perfect despite the dark cloud of knowing we would be leaving Mexico again soon.
January 13, 2009
December 26, 2008
After a whirlwind Christmas between sojourns to Mexico, it was time for my annual date with the mammogram at Roswell Park Cancer Institute. To my dismay, Dr. Kumar thought he detected an area of changed tissue density. An immediate ultrasound confirmed a suspicious mass, and I was told I needed a biopsy ASAP. I was to leave for Mexico three days later! What could be done? The Mammogram technician checked the schedule and conferred with Dr Kumar and since I had the good fortune to be the only client booked for that afternoon, the day after Christmas, they would do the biopsy for me that day! What a team. I got to go to Mexico and wait for the news to come by telephone on Dec 30.
December 29, 2008
In the spirit of the "all-nighter" we piloted the rented Mercury from Lewiston to Detroit overnight, picking up our friends Chuck & Maryann Taylor enroute. We travelled late under the guise of not wanting to complicate our lives with a hotel stay (but actually because we just ran out of time to do everyhting we needed to before departure). We arrived at the airport long before the airline staff who were would eventually check us in.
December 30, 2008
Our flight to Cancun was uneventful, perhaps because we slept much of the way. We picked up our Jeep from the Marriott hotel and headed west. Shortly after crossing into the state of Yucatan, we stopped at our friend's restaurant to introduce Chuck and Mary Ann to pollo al carbon, one of our favourite local meals. . .
And then Ron's phone rang.
I went out into the street for privacy, but of course the traffic noise was intense. Dr Kumar's soft voice gently told me the news that I had a new primary breast cancer, ER negative, in my left breast. This was shocking to me, as I was prepared for the news of cancer again, as I know that Dr Kumar is good at his job, and wouldn't just scare me for nothing, but I was very surprised to know that the cancer was a different animal, my previous tumor being ER positive. Which explained why taking Tamoxifen didn't protect me from it. Ron came outside to receive the news, and help me get myself back inside to deliver the bad news to my friends. What a downer for everyone, when we were all so excited to be in Mexico. We drove to our hacienda, Sta Ines, to drop some luggage off and pick up some different clothes for a few days in Merida, checked on the sheep, and after arriving in time to witness our caretaker bathing in the courtyard sheep tankand observe his lack of tan lines. We took a diversion down the road to the guest casas to give Antonio time to dress. We only stayed a short while before continuing in to Merida. I was feeling very sad because I didn't really want to leave Santa Ines. We got to Merida and took the Taylors to their hotel for check in and went to the house on Calle 49 for a little rest. We got together later for food I think.
Dec 31, New Years Eve,
We had a wonderful evening at Carlos' house on Calle 59 with the Taylors, Juan Pablo Bavio and wife Cecelia, Nari, and her friend (?). As usual the beef was superb, and so were the salads and wine. I received lots of positive wishes for my recovery. We went up on the roof at midnight to watch fireworks all over the city of Merida. It was really lovely
Jan 1, New Years Day, and my 56th Birthday!
We had a great day including going back to Carlos house for more grilled beef and salads. What an incredible feast. Norman and Judy Miller were able to join us later at Amaro, our favorite restaurant in Merida, for my birthday party. Also present were Fred and Marie, Mary Ann and Chuck, Carlos, Juan Pablo and Ron. Enrique, one of the waiters had bought me a cake, and the entertainer sang Happy Birthday to me. The entire restaurant was served a little piece of cake. Ron and I had our picture taken with the owner of the restaurant, who always visits with us in Spanish when we go in, but we discovered she speaks very good English, in deference to our English-speaking friends. I had a nice little salsa dance with Enrique. All of the waiters were involved in wishing me a happy birthday and Feliz Ano. It was nearly perfect despite the dark cloud of knowing we would be leaving Mexico again soon.
January 13, 2009
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