M
MARIPOSA
Guest
My mission is to now warn others to be extra vigilent in keeping track of any changes on your body. Several weeks ago I discovered that my breast cancer had metastasized to many parts of my body ~ several organs, my eye, by brain, and today we found out to several bone sites as well. Just because the mammograms all came back 'clean' means nothing when you are talking about breast cancer. Heck, it is now everywhere EXCEPT in my breast! The only way to detect the spread of this insideous disease is to have a complete body scan yearly, and no health coverage follows this logical protocal. It was only because I am diligent to follow up with every single dot and squiggle change on my body that we were able to biopsy that nodule on my neck and determine the cancer had metastasized. Each subsequent scan revealed more horrors. So please read my latest journal entry and take careful notes.
I am not bitter, and have not given up yet. I've just become more and more grateful that I don't actually feel 'sick' as well as for every second I have left to work on my projects. One of my 'long range goals' is to meet that Duck Crew for a mini meet in August in San Francisco before they head up to Alaska.
March 10, ’09 Dr. Lin Went today for my follow up on the PET scan I had about a week ago. (using radioactive isotopes injection for contrast) Seems the cancer has indeed metastasized not only to several organs and a couple places in my brain, but several places in my bones as well. Right now I am not a good candidate for my regular intravenous chemotherapy because of the complication of the blood brain barrier. This is what Google says about this:
The blood – brain barrier “It can be difficult to treat brain tumors with chemotherapy because of the blood – brain barrier. This is a natural filter within the body. It only allows certain substances through from the blood to the brain tissues. This is a natural defense mechanism. It is designed to keep harmful substances out of the brain.â€Â
~~ So as of now, the ball is in my court. Sad to say, I am now in the category of being “terminalâ€Â, which basically means that my cancer is no longer curable. The oncologist (cancer specialist) suggests that instead of my weekly infusions of Avistan and Taxol I could begin taking a pill form of chemo called Xeloda (an antimetabolite) which would prolong my life a little. I would take several pills a day for 2 weeks (no need to go to the hospital for this) and have a week off. Not sure how long this cycle would continue. The probable side effects are do-able, diarrhea, low blood counts, and my skin turning dark from sun sensitivity. I could also begin an injection of Zometa as a bone treatment (15 min infusion every 3 weeks) We will wait 7-10 days before making these decisions. This gives me time to rest up from previous chemo and radiation tx. I will watch closely for all the symptoms I am feeling and try to figure out which might be from the brain cancer itself and which are from the treatments. Mostly I have blurry vision, am often dizzy, somewhat nauseated, lethargic, fatigued, and have a tough time concentrating or remembering little details, like words. BTW, the radiation munchkins gobbled up most of my thinning hair so we shaved of the raggedy remains on Sunday. Now I can put a soothing cream on my scalp cuz this hair loss procedure is surprisingly extremely irritating, somewhat painful and my scalp is itching like crazy.
I am very disappointed that my vision has not improved by now from the 2 weeks of daily radiation. I really do believe that part of my dizziness is from this continual blurriness but my primary care doctor gently suggested that it is probably due to the cancer activity in my brain. I feel as though I’m always in a foggy tunnel and if I move too quickly I get very dizzy. An appointment with the eye doctor is high on my agenda to get a better picture of the progression of the choroidal growth in my eye to see if it is shrinking at all.
The other choice that I need to face is taking no more chemo type drugs and having hospice come in and take care of my basic needs. I do not even want to consider this option at this time. Thankfully I do not feel that SICK, just dizzy and fatigued mostly. Interestingly, the doctor asked me if I spend more than 50% of my time in bed. Not yet. Guess that should be one of the main points to consider when the time comes to reassess everything again further on down the road.
So on the way home from the hospital today we discussed all the changes I am now facing. It sucks that I must consider all of this, and I’d much rather crawl into bed and pull the covers over my head. So tomorrow I’ll just make my to do list of very important things to do, and we’ll just plug away at accomplishing what we can and hopefully will be better equipped to make my life changing decision in about a week.
FYI, I was denied any Social Security disability because I had not worked the required 40 quarters during the past 10 years. BUT I do qualify for early retirement immediately. Wish it didn’t take so long to process. I told E that he needs to apply for this as well since they keep cutting back on his hours at work. We are just grateful that he is currently employed at a job he enjoys so much, even if it is only part time. And all of my medical expenses are covered by the special MediCal breast cancer program. No matter how my cancer progresses, it is categorized as metastasized breast cancer.
My next update will be after I meet with my doctor to discuss Chemo pills vs Hospice. Meanwhile I’m going to tackle that dollhouse with a renewed vigor. Thank God I have something beautiful and magical to focus on right now!!! My sister and I decided that if these projects are what is keeping me going right now then I should order several more houses to work on. LOL I agree~~
Hugs, Ronda/Mariposa :loveya
I am not bitter, and have not given up yet. I've just become more and more grateful that I don't actually feel 'sick' as well as for every second I have left to work on my projects. One of my 'long range goals' is to meet that Duck Crew for a mini meet in August in San Francisco before they head up to Alaska.
March 10, ’09 Dr. Lin Went today for my follow up on the PET scan I had about a week ago. (using radioactive isotopes injection for contrast) Seems the cancer has indeed metastasized not only to several organs and a couple places in my brain, but several places in my bones as well. Right now I am not a good candidate for my regular intravenous chemotherapy because of the complication of the blood brain barrier. This is what Google says about this:
The blood – brain barrier “It can be difficult to treat brain tumors with chemotherapy because of the blood – brain barrier. This is a natural filter within the body. It only allows certain substances through from the blood to the brain tissues. This is a natural defense mechanism. It is designed to keep harmful substances out of the brain.â€Â
~~ So as of now, the ball is in my court. Sad to say, I am now in the category of being “terminalâ€Â, which basically means that my cancer is no longer curable. The oncologist (cancer specialist) suggests that instead of my weekly infusions of Avistan and Taxol I could begin taking a pill form of chemo called Xeloda (an antimetabolite) which would prolong my life a little. I would take several pills a day for 2 weeks (no need to go to the hospital for this) and have a week off. Not sure how long this cycle would continue. The probable side effects are do-able, diarrhea, low blood counts, and my skin turning dark from sun sensitivity. I could also begin an injection of Zometa as a bone treatment (15 min infusion every 3 weeks) We will wait 7-10 days before making these decisions. This gives me time to rest up from previous chemo and radiation tx. I will watch closely for all the symptoms I am feeling and try to figure out which might be from the brain cancer itself and which are from the treatments. Mostly I have blurry vision, am often dizzy, somewhat nauseated, lethargic, fatigued, and have a tough time concentrating or remembering little details, like words. BTW, the radiation munchkins gobbled up most of my thinning hair so we shaved of the raggedy remains on Sunday. Now I can put a soothing cream on my scalp cuz this hair loss procedure is surprisingly extremely irritating, somewhat painful and my scalp is itching like crazy.
I am very disappointed that my vision has not improved by now from the 2 weeks of daily radiation. I really do believe that part of my dizziness is from this continual blurriness but my primary care doctor gently suggested that it is probably due to the cancer activity in my brain. I feel as though I’m always in a foggy tunnel and if I move too quickly I get very dizzy. An appointment with the eye doctor is high on my agenda to get a better picture of the progression of the choroidal growth in my eye to see if it is shrinking at all.
The other choice that I need to face is taking no more chemo type drugs and having hospice come in and take care of my basic needs. I do not even want to consider this option at this time. Thankfully I do not feel that SICK, just dizzy and fatigued mostly. Interestingly, the doctor asked me if I spend more than 50% of my time in bed. Not yet. Guess that should be one of the main points to consider when the time comes to reassess everything again further on down the road.
So on the way home from the hospital today we discussed all the changes I am now facing. It sucks that I must consider all of this, and I’d much rather crawl into bed and pull the covers over my head. So tomorrow I’ll just make my to do list of very important things to do, and we’ll just plug away at accomplishing what we can and hopefully will be better equipped to make my life changing decision in about a week.
FYI, I was denied any Social Security disability because I had not worked the required 40 quarters during the past 10 years. BUT I do qualify for early retirement immediately. Wish it didn’t take so long to process. I told E that he needs to apply for this as well since they keep cutting back on his hours at work. We are just grateful that he is currently employed at a job he enjoys so much, even if it is only part time. And all of my medical expenses are covered by the special MediCal breast cancer program. No matter how my cancer progresses, it is categorized as metastasized breast cancer.
My next update will be after I meet with my doctor to discuss Chemo pills vs Hospice. Meanwhile I’m going to tackle that dollhouse with a renewed vigor. Thank God I have something beautiful and magical to focus on right now!!! My sister and I decided that if these projects are what is keeping me going right now then I should order several more houses to work on. LOL I agree~~
Hugs, Ronda/Mariposa :loveya
How often do people save those words til it's too late. You are like Rembrandt who painted the Mona Lisa but having a chance to get feedback of greatness in your own time.