Today did not go anything like I thought it would and I can not say it went well.
I knew I was going to meet with the radiologist this morning. My understanding was to go talk about whether or not more radiation could be done to the chest area again. I had some questions ready to ask, thought I would come home, share with Chris and consider what to do.
Part one; I get in my car to leave and it is dead! It sputters a little and dies. I leave it half in the driveway, and covering the sidewalk. I jump into Matt's car, whose door does not open and you have to crawl across the seat to open the drivers door. Of course this happens the one day I decide to wear a skirt! Off to a great start..
Part two; After more than a year since I last walked through the doors to radiology, it was not a great feeling being back. Everyone is super nice but I really didn't want to see them again.
Now I am taken upstairs to have vitals checked, BP 155/100. Not good! Nurse gets me some water and has me take some medicine for anxiety. Next, the doctor comes up, has me change to the lovely gown and looks at my "rash" which is really the tumor. After we discuss when all this began, how it's changed, etc. he gets a sharpie, yup a marker and draws all over me. He is now marking where the radiation will be. It is a big area and I look something like Matt did when he was 3 and colored himself with markers. I know this is all a normal part of the procedure, I just wasn't mentally ready for it to happen today.
We talk some more, I try to ask the obvious question, "what happens if I get too much radiation". Some of the answer wasn't so bad, some was awful. He sends me downstairs to have more prep done so I will be ready to begin treatment. I am still in my lovely gown, my shirt is in my purse and I am on the elevator with strangers. Door opens to more people getting on, how embarrassing!
Then, there I am once again lying on that table, trying to hold it together while I am prepped for 25 more rounds of radiation. I am told they need a picture of me ( my face) for my file. I stood there thinking "Am I supposed to smile? Because I really don't want to. But I did.
Part Three;
I am asked if I take Xeloda along with my Tykerb. Xeloda is an oral chemotherapy usually taken with Tykerb. Also used to increase the effects of the radiation treatment, resulting in what one hopes are better results. I tell him no, I have not.He calls and speaks to my Onc. They think I have had it in the past but I know I have not. I don't think he trusted my memory. You don't forget if you have had chemo.
So, my two doctors decide the radiation combined with the chemo for 5 weeks is the best thing to do. Surprise....you are also starting chemo!! Ummm, Can I work, can I teach, can I be out in the sun/heat?? Answer, for a few more weeks. There goes the dagger right through my heart :(
Part 4;
So,I climb back in the car,call Chris and loose it. When I get home I try hard to keep my mind on my upcoming vacation. I go to the airline site to make sure I know all the rules and regulations for "carry on" bags. While there I run into this. Because I am a breast cancer survivor, I am advised to fill this out and present when I go through the screening procedure at the airport so I can be taken somewhere discreet if I have to have a "pat down" and they discover a prosthesis. "health condition, disability, medical device"! Ouch, those words stung!
Now, I realize these choices are mine to make and I will be thinking, researching, getting advice and most importantly praying for discernment.
Needless to say, this was an "unexpected day" in which I feel everything has just flipped upside down.
~ My journey of living life with metastatic breast cancer and "running to recovery"!
Thursday, July 21, 2011
Tuesday, July 19, 2011
A very long day!
Well, finally it is over! PET scan was this morning followed by an apt. with Dr. A. First things first, the test results were all clear! Prayers answered in a mighty way! This does not mean I have not had a re-occurrence, I have.It is located in the original cancer site and will require treatment.
The amazing part is that absolutely nothing showed up on ANY of the tests, including this area that was biopsied. So, there has been no further spread! !Dr.A told us over and over how "odd" and complicated my cancer has behaved, but that these are great results!
So, where we go from here? The standard protocol would now be chemotherapy. However, we all agree that the treatments I have done so far have worked very well. Usually when the cancer spreads to the bone it is 6 mo. to a year before it spreads further to the organs. It has been just about 4 years now for me.
Because of that he is keeping me on the protocol I have been doing and sending me to my radiologist Thursday morning to have him evaluate whether or not I am able to have more radiation to this particular area. This is now the next prayer request. We are hoping this will "shut down" this tumor along with the current meds I am on to prolong chemo, if I even choose to go that route at all.
I have, in the past responded well to radiation. Surgery is really not an option as they would have to remove the chest wall and then have skin grafts done using skin from other parts of my body. It MIGHT get it all and it might not. Dr. A does not feel it is worth the risks. I would say we agree since there is no way to know if it would even work.
Basically I am in "uncharted waters" and other than chemo being the standard protocol here everything else is an educated guess. Prayer for discernment here.
By the time I finished the PET my migraine was in full swing. I took 3 advil, imitrix nasal spray and a phenergen. I was so sick I could not eat or drink anything, including my coffee. I had to lay down in the car for about an hour and wait it out. Finally, it eased up and I was able to eat and drink. We had about a 2 hour wait from test to Dr. visit so this is how it was spent.
I felt good enough by the time we headed home to go to Yogurt story.That hit the spot:) I am tired and relieved to be done with this day. Prayerfully, I will be able to have radiation and it will "knock this one out". Then I can once again dance with Mr.NED ( No Evidence of Disease) until next time.
* Mr NED is a saying my friend Kim uses on her blog and I thought it was great! Thanks Kim!
The amazing part is that absolutely nothing showed up on ANY of the tests, including this area that was biopsied. So, there has been no further spread! !Dr.A told us over and over how "odd" and complicated my cancer has behaved, but that these are great results!
So, where we go from here? The standard protocol would now be chemotherapy. However, we all agree that the treatments I have done so far have worked very well. Usually when the cancer spreads to the bone it is 6 mo. to a year before it spreads further to the organs. It has been just about 4 years now for me.
Because of that he is keeping me on the protocol I have been doing and sending me to my radiologist Thursday morning to have him evaluate whether or not I am able to have more radiation to this particular area. This is now the next prayer request. We are hoping this will "shut down" this tumor along with the current meds I am on to prolong chemo, if I even choose to go that route at all.
I have, in the past responded well to radiation. Surgery is really not an option as they would have to remove the chest wall and then have skin grafts done using skin from other parts of my body. It MIGHT get it all and it might not. Dr. A does not feel it is worth the risks. I would say we agree since there is no way to know if it would even work.
Basically I am in "uncharted waters" and other than chemo being the standard protocol here everything else is an educated guess. Prayer for discernment here.
By the time I finished the PET my migraine was in full swing. I took 3 advil, imitrix nasal spray and a phenergen. I was so sick I could not eat or drink anything, including my coffee. I had to lay down in the car for about an hour and wait it out. Finally, it eased up and I was able to eat and drink. We had about a 2 hour wait from test to Dr. visit so this is how it was spent.
I felt good enough by the time we headed home to go to Yogurt story.That hit the spot:) I am tired and relieved to be done with this day. Prayerfully, I will be able to have radiation and it will "knock this one out". Then I can once again dance with Mr.NED ( No Evidence of Disease) until next time.
* Mr NED is a saying my friend Kim uses on her blog and I thought it was great! Thanks Kim!
Monday, July 18, 2011
Today & Tomorrow
Well it is 9 PM and I have made it so far with my "no caffeine, sugar or exercise for 24 hrs" regiment. I did get to have my morning coffee thanks to my son Matt who did a Starbucks run for his deperate mama :). We had run out of coffee, today of all days!
The no sugar part is the easiest of all three. I did have one group class this morning and met with a new client tonight. No exercise for me but helped keep my mind elsewhere.
Tomorrow morning concludes the testing and then we meet with Dr.A to find out ALL the results. I have had my moments of anxiety but have found keeping busy really helps a lot.
We have continued to pray that these tests do not show any further spread than what we recently found out with the skin biopsy. Or better yet that they show no spread what so ever!
Your thoughts and prayers are appreciated as we face tomorrow. The morning will be difficult after fasting beginning tonight. This, combined with the lack of caffeine triggers my migraines. Then we pray for good results and discernment.
“With man this is impossible, but with God all things are possible.”
Matthew 19:26
The no sugar part is the easiest of all three. I did have one group class this morning and met with a new client tonight. No exercise for me but helped keep my mind elsewhere.
Tomorrow morning concludes the testing and then we meet with Dr.A to find out ALL the results. I have had my moments of anxiety but have found keeping busy really helps a lot.
We have continued to pray that these tests do not show any further spread than what we recently found out with the skin biopsy. Or better yet that they show no spread what so ever!
Your thoughts and prayers are appreciated as we face tomorrow. The morning will be difficult after fasting beginning tonight. This, combined with the lack of caffeine triggers my migraines. Then we pray for good results and discernment.
“With man this is impossible, but with God all things are possible.”
Matthew 19:26
thank you in advance~elayne
Wednesday, July 13, 2011
Day 3 and Muga Scan results
Today was the muga scan to check on my heart function. A few years ago after being put on a drug called Herceptin my IF ( Injection fraction) number dropped to 45 from a start of 58 before treatment ( which is considered fine). Due to the drop to 45 ( which was not ok) I had to stop the treatment on Herceptin.
This past January I was checked again and it was back up to 50, better! Today, as I laid on the table I was praying for a higher number, something over 50.
Within 30 seconds of that prayer I was told first test showed my IF # at 54! I smiled and said "Thank you Lord".
Then, the second test , as I was saying Thank you, it was 56! Inside I am smiling a big smile. Test 3...IF # 57!! One away from where I began before the treatment and damage to my heart!
This was good news today and I am very pleased with that number! Keep the prayers coming everyone!
Thank you all for allyour thoughts, prayers and words of encouragement.
elayne~
This past January I was checked again and it was back up to 50, better! Today, as I laid on the table I was praying for a higher number, something over 50.
Within 30 seconds of that prayer I was told first test showed my IF # at 54! I smiled and said "Thank you Lord".
Then, the second test , as I was saying Thank you, it was 56! Inside I am smiling a big smile. Test 3...IF # 57!! One away from where I began before the treatment and damage to my heart!
This was good news today and I am very pleased with that number! Keep the prayers coming everyone!
Thank you all for allyour thoughts, prayers and words of encouragement.
elayne~
Tuesday, July 12, 2011
Days one and Two...
Just a note on how things are going so far. I wish I had some results to share, but I do not have them yet.
Monday was a long day with a bone scan, chest x-ray and labs. After so many years of going through these tests you get pretty good at reading the technicians expressions and knowing what "lets just take a few more pictures" means.
I think I did a pretty good job at freaking myself out trying to do just that and was sure by the end that they "saw things". After all, the girl that did my chest xray did not make eye contact with me after she "checked the films" and the one that did my bone scan said "let's just take a few closer shots here for grins". OK, I know I am reading too much into this but in my nervousness I tend to do this. So, I wait for the real answers.
As always, my hubby was by my side and we went out for lunch and walked around an outdoor shopping area while we waited for me to glow! There is a 3 hr wait for the radiation to do it's thing before the bone scan.
Day two was today with a visit to my neurologist. Filled him in on what is going on, then discussed how things are going with my headaches (HA)/migraines.
Also, I had an "episode" about 2 weeks ago with severe dizziness. He said it sounded like vertigo and was probably the onset ( an aura) for a migraine. For that, I am to let him know if it happens again. For the HA and migraines he gave me some different meds to try and said to stay on the Advil ( works well for me) for the HA.
Tomorrow is day 3 of tests with a muga scan in the AM. Will write more when I know more. Thank you for all your thoughts and prayers.
Monday was a long day with a bone scan, chest x-ray and labs. After so many years of going through these tests you get pretty good at reading the technicians expressions and knowing what "lets just take a few more pictures" means.
I think I did a pretty good job at freaking myself out trying to do just that and was sure by the end that they "saw things". After all, the girl that did my chest xray did not make eye contact with me after she "checked the films" and the one that did my bone scan said "let's just take a few closer shots here for grins". OK, I know I am reading too much into this but in my nervousness I tend to do this. So, I wait for the real answers.
As always, my hubby was by my side and we went out for lunch and walked around an outdoor shopping area while we waited for me to glow! There is a 3 hr wait for the radiation to do it's thing before the bone scan.
Day two was today with a visit to my neurologist. Filled him in on what is going on, then discussed how things are going with my headaches (HA)/migraines.
Also, I had an "episode" about 2 weeks ago with severe dizziness. He said it sounded like vertigo and was probably the onset ( an aura) for a migraine. For that, I am to let him know if it happens again. For the HA and migraines he gave me some different meds to try and said to stay on the Advil ( works well for me) for the HA.
Tomorrow is day 3 of tests with a muga scan in the AM. Will write more when I know more. Thank you for all your thoughts and prayers.
Sunday, July 10, 2011
Keeping the Peace
On Wednesday I was in the middle of teaching my group Fit class and the phone rang. I just new it was going to be the results from the biopsy. When I answered and it was the doctor, not the nurse, I knew the outcome already. He didn't have to say a thing. He continued on to tell me the results; "consistent with metastatic carcinoma". In other words, a re-occurrence of the original breast cancer.
I had no idea that a rash could be a symptom of the cancer re-occurring.When the nurse saw it, she called the Onc. right away and sent me for a biopsy a few days later. I could tell from her expression and quickly getting me in for the biopsy that something looked wrong.
A few days later, Chris went with me and we felt pretty good about things after meeting the doctor as he said "I don't think you have anything to worry about". Also, I was applying hydrocortizone and it was going away.
Needless to say we were surprised by the results. My Onc. called me about an hour later and said to keep my already scheduled scans and appointment with him as they were.
So, here we are again.
Monday~ bone scan, chest x-ray and labs
Tuesday~ Neurologist to have my check-up on the migraines
Wednesday~ Muga scan ( to check my heart)
Following Tuesday(19th)~ PET scan and meet with Onc. to go over all results and where we go from here.
So that is where things are at on the medical side.I do want to share with you that I really am doing well. Don't get me wrong, I have my moments of fear and anxiety, but I do feel a peace and a calmness.
For all of you at FBC today Coach Copeland said it perfectly.
~Confidence ~Courage~ Commitment~
I am Confident that He is in control and I know He has been down this road with me many times before.
Because of this I have Courage to face each day,these tests and what I need to do knowing~
"With man this is impossible, but with God all things are possible.” Matthew 19:26
Commitment;
If God is for us, who can be against us? Romans 8:31
Please join our family in prayer as we go through these next two weeks of testing, results and decisions. Specifically, we are praying that this re-occurrence is "localized" and there is no further spreading.
Thank you all in advance~elayne
I had no idea that a rash could be a symptom of the cancer re-occurring.When the nurse saw it, she called the Onc. right away and sent me for a biopsy a few days later. I could tell from her expression and quickly getting me in for the biopsy that something looked wrong.
A few days later, Chris went with me and we felt pretty good about things after meeting the doctor as he said "I don't think you have anything to worry about". Also, I was applying hydrocortizone and it was going away.
Needless to say we were surprised by the results. My Onc. called me about an hour later and said to keep my already scheduled scans and appointment with him as they were.
So, here we are again.
Monday~ bone scan, chest x-ray and labs
Tuesday~ Neurologist to have my check-up on the migraines
Wednesday~ Muga scan ( to check my heart)
Following Tuesday(19th)~ PET scan and meet with Onc. to go over all results and where we go from here.
So that is where things are at on the medical side.I do want to share with you that I really am doing well. Don't get me wrong, I have my moments of fear and anxiety, but I do feel a peace and a calmness.
For all of you at FBC today Coach Copeland said it perfectly.
~Confidence ~Courage~ Commitment~
I am Confident that He is in control and I know He has been down this road with me many times before.
Because of this I have Courage to face each day,these tests and what I need to do knowing~
"With man this is impossible, but with God all things are possible.” Matthew 19:26
Commitment;
If God is for us, who can be against us? Romans 8:31
Please join our family in prayer as we go through these next two weeks of testing, results and decisions. Specifically, we are praying that this re-occurrence is "localized" and there is no further spreading.
Thank you all in advance~elayne
Friday, July 8, 2011
Thank you!
Wow! Thank you so much for all your prayers and encouragement! I can truly feel all your love and prayers along with a great sense of peace :)
elayne~
elayne~
Thursday, July 7, 2011
Biopsy Results
My Biopsy results came back positive. Unfortunately, I have had another re-occurrence. I will be going through 2 weeks of testing and doctors apts. beginning on Monday. When all test results are in Chris and I will discuss with my doctor what the next steps will be. We are praying that this re-occurrence is "localized" and has not spread anywhere else. Your prayers on this are much appreciated.
According to Eric Winer, MD, chief scientific advisor to Susan G Komen for the Cure®, the treatment of metastatic breast cancer has evolved dramatically over the past 10 years, and will evolve even more in the next decade. "I look forward to a time when metastatic breast cancer will be entirely manageable with well tolerated therapy. It may be quite some time before we can cure metastatic disease, but women with metastatic breast cancer can expect to live far longer and far better in the years ahead than in the past. "
According to Eric Winer, MD, chief scientific advisor to Susan G Komen for the Cure®, the treatment of metastatic breast cancer has evolved dramatically over the past 10 years, and will evolve even more in the next decade. "I look forward to a time when metastatic breast cancer will be entirely manageable with well tolerated therapy. It may be quite some time before we can cure metastatic disease, but women with metastatic breast cancer can expect to live far longer and far better in the years ahead than in the past. "
Friday, July 1, 2011
Nonna's Little Liam
When you think about your Grandparents you always remember them by the fond grandparent name you called them, Grandma, Nana, Mimi, etc.I have never heard anyone refer to a grandparent by their first name, unless it was a part of the grandparent name. Therefore, I have thought long and hard about the name I would like my grandkids to call me and have chosen Nonna, which is Italian for Grandmother. So, here is a picture of Nonna's Little Liam!
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