So, the cancer has moved into my brain,which makes evertythinhg weird. My hands don't really talk to each other the way that they used to ad typing doesn't work quite right either.I have had to reset many passwords. Melanie has helped a lot. Melanie makes most of the food of us. She makes wonderful soups and cookies that I can eat. She also made a rice dish that had meat and fruit and was wonderful. having a dietary restriction at the holipital has gone a little better than expected. after radiation there is a reck will get mr gluten tree food if I need it. I am normally an expert type but not these days.
Jonas has been the rock holding down the house.
Vanesssa has helped keep the sanity. my little house has started to buzz.
Jonas is organizing s little benefit for me at the afru gallery.
it's a long stretch but really want a bath so that I can lay don' and not worry bout hitting myself on anything.
it is unbelievable how long it takes to type for now, more later.
Much love and light to you all who help me wp much, escecaillly now that I need it.
There is lots to say here but I am moving on. I do not know the history
I love honey and would love to try my hand over here, maybe tin womwhwlp ;0
xoxoxo
Sunday, December 27, 2015
Saturday, December 19, 2015
Adjustment
Lynparza took quite a lot out of me. I had severe fatigue and some nausea. I felt really disconnected from myself. I had a couple of dizzy episodes and I felt so tired that it was sometimes hard to drive.
That was not an ideal time to go back to work but I must say that place is full of kind, compassionate and supportive people.
Still, I took 2 days as vacation days this week to try to get things under control. My boss did not encourage me to user PTO but I feel much better for having done so. DTNA will definitely allow you to take advantage of their offerings at least to a point but part of what I like about working there is that most people don't.
First I took 2 days off of my pills (per my doctor) and then I reduced my dose from 16 pills a day down to 12. I feel so much better. I hope that this is sustainable and that I can gen on with having daily activities again. I really miss dancing. I do also miss being more productive at work. I have gotten a few things done, but is miss the normal grind.
The real test will be if my cancers shrink. Unfortunately, I don't have reliable tumor marker in my blood do seeing my nipple clear up should be my first hint. They will also probably do another test in month or two. They may also do a brain scan before that. I had a couple dizzy spells and they want to do a brain MRI to make sure that nothing fishy is going on up there.
I got a flaming heart from a recent art show at the AFRU gallery.
Much love and light to you all. <3
That was not an ideal time to go back to work but I must say that place is full of kind, compassionate and supportive people.
Still, I took 2 days as vacation days this week to try to get things under control. My boss did not encourage me to user PTO but I feel much better for having done so. DTNA will definitely allow you to take advantage of their offerings at least to a point but part of what I like about working there is that most people don't.
First I took 2 days off of my pills (per my doctor) and then I reduced my dose from 16 pills a day down to 12. I feel so much better. I hope that this is sustainable and that I can gen on with having daily activities again. I really miss dancing. I do also miss being more productive at work. I have gotten a few things done, but is miss the normal grind.
The real test will be if my cancers shrink. Unfortunately, I don't have reliable tumor marker in my blood do seeing my nipple clear up should be my first hint. They will also probably do another test in month or two. They may also do a brain scan before that. I had a couple dizzy spells and they want to do a brain MRI to make sure that nothing fishy is going on up there.
I got a flaming heart from a recent art show at the AFRU gallery.
Much love and light to you all. <3
Tuesday, December 8, 2015
Got it
My insurance is actually covering the fancy new drug Lynparza. Yay! It is ordered through a specialty pharmacy so it was delivery to my doorstep via FedEx today. I got home from work around 3 and took my first 8 pills. I also took a lorazepam which helps nausea and anxiety. I might not experience any nausea but with most meds I have found that I get the worst side effects on my first dose so I decided to be proactive.
I have been working part time all week and it has been going well. I need to establish a new routine, though. I keep forgetting to take my pain meds and then I wonder why I don't feel great. Oops.
My skin mets have been getting worse and they are sore and gross so I am hoping that the new drug improves them quickly. I also still have pain in my sternum. So, I'm on a slightly higher pain dose than I was 3 weeks ago. If all goes well then I'll be able to reduce my dose again soon. Luckily I tolerate the drugs pretty well. At least now that I eat prunes every day.
I have been working part time all week and it has been going well. I need to establish a new routine, though. I keep forgetting to take my pain meds and then I wonder why I don't feel great. Oops.
My skin mets have been getting worse and they are sore and gross so I am hoping that the new drug improves them quickly. I also still have pain in my sternum. So, I'm on a slightly higher pain dose than I was 3 weeks ago. If all goes well then I'll be able to reduce my dose again soon. Luckily I tolerate the drugs pretty well. At least now that I eat prunes every day.
Thursday, December 3, 2015
Lynparza
So, I might be able to get Lynparza from a specialty pharmacy and have my insurance cover it. The drug is approved by the FDA if you meet a certain list of things and I actually qualify, we think, when we go through the list. This is definitely in the gray area, though. I will know more tomorrow. I am hopeful that I'll get good response with this and am looking forward to taking a pill instead of infusions.
I also am officially going back to work tomorrow, starting part time for the first week and then back to normal after that. I have missed my coworkers and the work that I do. I told them that I was planning to work from home tomorrow to get my paperwork in and done and to start to try to catchup and setup meetings for getting up to speed on things.
I had thought that I would have to be off pain meds before going back to work but after speaking with HR and becoming familiar with my situation and how meds effect me I have decided to not wait for that. I have adjusted to the meds and I feel like I can contribute at a normal amount with what I am currently on. Things are never going to be like they were before I was diagnosed but I'm ready to move on with my new normal.
Yesterday I went to the ER with severe pain in my shoulder and in my side. The pain had lasted for about 12 hours and felt something like charley horse and while I could make it lessen by keeping still in a relaxing position many movements would take the pain right up to a 10 on the pain scale. I couldn't even talk. They gave me IV pain killers and anti inflammatory meds and did random tests. They decided that I don't have a blood clot, I don't have an electrolyte imbalance, I don't have any heart, kidney or gall bladder issues. Maybe it has something to do with the increase in cancer in lymph nodes near where the pain is. Either way, the sent me on my way. In talking more to my oncologist she talked to me about various prescription drugs that are already in medicine cabinet that I can use to try to help this situation if it comes up again. I really have quite the stash at this point. I really appreciate it that she educates me and gives me all the tools that I might need to be able to help me deal with all of the nasty chemo, drug, cancer side effects and issues. I seriously love my medical oncologist.
The work that I have been doing with mediation was a significant help in dealing with my severe pain. Panic
I also got the results of my PET/CT scan. I have progression in breast, skin and lymph nodes and now also have some action in my liver that wasn't there before. Mostly bad news, but it is good to see that my breast/skin seem to respond the same as the rest of me. We will continue to look at the issue as one problem for my whole system.
Melanie and Bradley have been an amazing support for me. The two of them did transportation to and from the ER and gave me sweet, gentle reassurances, love and support. Wow! I am so happy to have them in my life.
There have also been many others that support me as well. I am overflowing with love for my people. Jonas, Vanessa, Sarah, Erin, Erica, Lisa, Michael, Ryan, Arlene, Jill, Lina, Mom, Mary...The list goes on.
I also am officially going back to work tomorrow, starting part time for the first week and then back to normal after that. I have missed my coworkers and the work that I do. I told them that I was planning to work from home tomorrow to get my paperwork in and done and to start to try to catchup and setup meetings for getting up to speed on things.
I had thought that I would have to be off pain meds before going back to work but after speaking with HR and becoming familiar with my situation and how meds effect me I have decided to not wait for that. I have adjusted to the meds and I feel like I can contribute at a normal amount with what I am currently on. Things are never going to be like they were before I was diagnosed but I'm ready to move on with my new normal.
Yesterday I went to the ER with severe pain in my shoulder and in my side. The pain had lasted for about 12 hours and felt something like charley horse and while I could make it lessen by keeping still in a relaxing position many movements would take the pain right up to a 10 on the pain scale. I couldn't even talk. They gave me IV pain killers and anti inflammatory meds and did random tests. They decided that I don't have a blood clot, I don't have an electrolyte imbalance, I don't have any heart, kidney or gall bladder issues. Maybe it has something to do with the increase in cancer in lymph nodes near where the pain is. Either way, the sent me on my way. In talking more to my oncologist she talked to me about various prescription drugs that are already in medicine cabinet that I can use to try to help this situation if it comes up again. I really have quite the stash at this point. I really appreciate it that she educates me and gives me all the tools that I might need to be able to help me deal with all of the nasty chemo, drug, cancer side effects and issues. I seriously love my medical oncologist.
The work that I have been doing with mediation was a significant help in dealing with my severe pain. Panic
I also got the results of my PET/CT scan. I have progression in breast, skin and lymph nodes and now also have some action in my liver that wasn't there before. Mostly bad news, but it is good to see that my breast/skin seem to respond the same as the rest of me. We will continue to look at the issue as one problem for my whole system.
Melanie and Bradley have been an amazing support for me. The two of them did transportation to and from the ER and gave me sweet, gentle reassurances, love and support. Wow! I am so happy to have them in my life.
There have also been many others that support me as well. I am overflowing with love for my people. Jonas, Vanessa, Sarah, Erin, Erica, Lisa, Michael, Ryan, Arlene, Jill, Lina, Mom, Mary...The list goes on.
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