Today was my radiation prep appointment. They had me drink 2 bottles of barium (normally I only have to drink 1) for a very in depth CT scan of my new tumors. The barium has never made me ill before, but today is another story. I was hardly able to keep it down, now that the scans are over I still feel like my tummy wants to rebel. ICK.
So for my head I showed you the mask they made me ware during radiation. It allowed for no movement so that the lasers hit the same place every time. So for my tummy and leg they also had me on a body mold. It keeps everything in the same spot everyday. Every scan will be the same. They also draw red marks on me and the mold to show when the lasers line up. Its really pretty neat. As always I love the people there. Its nice to be able to joke in an awkward situation. Like how they draw the radiation lines on my skin. You wouldn't expect that on a normal day. :) Things get a bit personal.
Now that we finished today successfully, we are waiting on a phone call that says when we start my daily radiation. We may know today or next week. As always hurry up and wait.
As for me, if I get to feeling better we are going to go to the park. Its supposed to be 70 today, an its perfect weather to let little man run.
March 10, 2014
March 9, 2014
"The Plan" (well what we know right now)
Ok its been a busy few days. To recap everything ….
1. The tumors in my brain, in my fluid around my brain all shrank or stayed stable. With the original count of 9+ tumors that is a HUGE deal!!! Woo hoo!!!
2. Found a new tumor on my left tibia. (right under by knee) This was a shock because I have no pain from it.
3. Found a new tumor in my small intestine. Rather large and possibly already growing into a cluster of bowels. (glamorous sounding right)? This one I expected. This was why hospice wanted scans done. Ive been having tummy pain for weeks now.
4. Due to good brain scan, and new findings Im off hospice and back into the care of my oncologist. (Hospice only takes/keeps patients if there is no further treatment that can be done. OR if a patient refuses treatment and is not seeking a cure) Well we have treatment options for my tummy and leg. So we are TAKING IT! So far there isn't anything we can do for my brain, but it seems to be fighting on its own. So we broke up with hospice so to speak! This is a great thing. The fight continues!
Whats our next step? We met with my Radiologist Oncologist friday. We are in for 15 rounds of radiation to my tummy, and 20 rounds to my leg. I go in Monday to have my CT scan done with the lasers. (what I call them) and get me all lined up on the table. (if you've read earlier posts I put a pic of my 'mask' for radiation they will do the similar just lower) The doctor said he will for sure be able to get most of it, but he cannot guarantee all. Remember Im just buying as much time as I can. My brain, brain fluid, spinal fluid are all heavily involved with cancer.
To sum it up we are doing good. We have a new plan. Heck, just a few months ago I was told I wouldn't see christmas. Now Im back to looking at treatment plans. We get to reevaluate everything. My Docs are also looking at chemo or other similar options for after radiation. Now that Ive shown improvement in the brain I may qualify for a study or trial. We won't know for a while.
I have many side effects but overall we are doing good. This is wonderful news.
1. The tumors in my brain, in my fluid around my brain all shrank or stayed stable. With the original count of 9+ tumors that is a HUGE deal!!! Woo hoo!!!
2. Found a new tumor on my left tibia. (right under by knee) This was a shock because I have no pain from it.
3. Found a new tumor in my small intestine. Rather large and possibly already growing into a cluster of bowels. (glamorous sounding right)? This one I expected. This was why hospice wanted scans done. Ive been having tummy pain for weeks now.
4. Due to good brain scan, and new findings Im off hospice and back into the care of my oncologist. (Hospice only takes/keeps patients if there is no further treatment that can be done. OR if a patient refuses treatment and is not seeking a cure) Well we have treatment options for my tummy and leg. So we are TAKING IT! So far there isn't anything we can do for my brain, but it seems to be fighting on its own. So we broke up with hospice so to speak! This is a great thing. The fight continues!
Whats our next step? We met with my Radiologist Oncologist friday. We are in for 15 rounds of radiation to my tummy, and 20 rounds to my leg. I go in Monday to have my CT scan done with the lasers. (what I call them) and get me all lined up on the table. (if you've read earlier posts I put a pic of my 'mask' for radiation they will do the similar just lower) The doctor said he will for sure be able to get most of it, but he cannot guarantee all. Remember Im just buying as much time as I can. My brain, brain fluid, spinal fluid are all heavily involved with cancer.
To sum it up we are doing good. We have a new plan. Heck, just a few months ago I was told I wouldn't see christmas. Now Im back to looking at treatment plans. We get to reevaluate everything. My Docs are also looking at chemo or other similar options for after radiation. Now that Ive shown improvement in the brain I may qualify for a study or trial. We won't know for a while.
I have many side effects but overall we are doing good. This is wonderful news.
March 4, 2014
We're Fighting Back!
I got my test/scan results today. Bad news? I have 2 new tumors. One in my small bowel, and another in my tibia. The good news? Everything in my brain shrunk! I mean everything! This is the best news we could have gotten. Good enough that we are about to notify Hospice that we are getting off their care. (I have to get off hospice care to be taken back to active treatment by my oncologist).
So my new treatment plan is this (as of right now) they are planning on radiation for my tummy and my left leg. After that I have no idea. I don't meet with my doctor until the 19th, lucky duck is on vacation. We are likely to hear from radiation soon and get a treatment plan set up for them.
Im excited at the good news. It means Im back to not having to count days/weeks to live. It gives me even more time. I explain it to myself as 'a few steps forward, and a couple steps back'. It stinks. Being told you're dying to have them turn around in 3 months and tell you that your body is healing, and we now have more options is hard to process for me.
Im having a hard time wrapping my head around this good news. Ive been spending a long time becoming at peace with everything going on. Im now having a hard time believing it, and getting excited. Ill get there. It will just take me some time, and when I hear what the doctor says will help too. No matter what happens, we always said we are Fighting to the end.
So my new treatment plan is this (as of right now) they are planning on radiation for my tummy and my left leg. After that I have no idea. I don't meet with my doctor until the 19th, lucky duck is on vacation. We are likely to hear from radiation soon and get a treatment plan set up for them.
Im excited at the good news. It means Im back to not having to count days/weeks to live. It gives me even more time. I explain it to myself as 'a few steps forward, and a couple steps back'. It stinks. Being told you're dying to have them turn around in 3 months and tell you that your body is healing, and we now have more options is hard to process for me.
Im having a hard time wrapping my head around this good news. Ive been spending a long time becoming at peace with everything going on. Im now having a hard time believing it, and getting excited. Ill get there. It will just take me some time, and when I hear what the doctor says will help too. No matter what happens, we always said we are Fighting to the end.
March 3, 2014
Snow day!
So since the ice/snow/sleet/hair/rain the medical office was closed. Lets be honest, all of NWA was shut down. Due to this I didn't get my test results today. As of right now schools are closed tomorrow, but it doesn't say my oncologist is closed. Im crossing my fingers that they are up and running. I know Im wishing that for my own selfish reasons. I hope the roads are clear enough people can safely get to work.
Today we kept our minds off the impending news. We got out slowly and brought my mom lunch. Today is her birthday and she lucked out with a snow day! She gets another tomorrow as they have already closed school (again). I swear these kids are going to be going to school all summer.
So another day of waiting. I see my nurse tomorrow as well. Ill tell everyone what I find out, once I find out.
Today we kept our minds off the impending news. We got out slowly and brought my mom lunch. Today is her birthday and she lucked out with a snow day! She gets another tomorrow as they have already closed school (again). I swear these kids are going to be going to school all summer.
So another day of waiting. I see my nurse tomorrow as well. Ill tell everyone what I find out, once I find out.
March 1, 2014
Well thats fun...
I had my scans done yesterday. I have a love/hate relationship with scan day. I love the idea of getting info on whats going on inside my body, but I hate fasting and getting poked all day. During my CT scan a plastic part of my iv broke and sprayed contrast fluid all over me and the machine. (lovely) They weren't sure how much contrast actually went in before breaking so I wasn't allowed another dose. The other part is for 25-48 hours I become radioactive. Its bad enough the nurse can't even stay in the room for the first 45 minutes after being injected. So that means once home, loads of water and no being near baby for 24 hours or more.
So we should find out monday what the results are. Until then we are trying to keep our minds off of it. Luckily its easy to do. My husband woke up sick, Ive got the sniffles, so we are trying to let him rest. All the while I watch the baby. Luckily Elliot doesn't want to cuddle, but prefers to play by himself today. (I lucked out) Thats it for now, Im going to go crazy disinfecting my house. Lysol here I come! (Elliot just went down for his morning nap…Eric can nap, I can clean! )
So we should find out monday what the results are. Until then we are trying to keep our minds off of it. Luckily its easy to do. My husband woke up sick, Ive got the sniffles, so we are trying to let him rest. All the while I watch the baby. Luckily Elliot doesn't want to cuddle, but prefers to play by himself today. (I lucked out) Thats it for now, Im going to go crazy disinfecting my house. Lysol here I come! (Elliot just went down for his morning nap…Eric can nap, I can clean! )
February 26, 2014
Whats up?
Yesterday we went and visited my oncologist. My Hospice doctor/nurse team decided due to new symptoms it would be nice to get some new scans to see whats going on. Luckily my oncologist agreed and we now have scans set for friday!!! Finally a peek into whats going on. More tumors? Less? or are we stable?? Im happy to be able to get a glimpse. Granted now Im antsy to get this over with.
Today Ive spent most of the day in bed. My joints are stiff which causes it hard to walk. I also have a headache thats just been nagging at me all day. (yes Ive taken meds). So in bed I lay. Only thing that helps is sleep. My eyes are blurry, so its harder and harder to read. Words just seem to slide together into a long black line. Sometimes they even wiggle! Gotta love what a brain can do.
I did manage to get some housework done yesterday. (I actually enjoy housework) I went to grab a shirt…and promptly realized my new banana republic shirt had shrunk. Round of applause……I had a dry clean only shirt that I didn't know about. That lovely shirt (worn once) now can fit an oddly shaped 7 yr old. On a brighter note I finally found some sunscreen that doesn't smell like sunscreen! its from Targets in house brand "up&up" and its just a little bottle labeled moisturizing cream with spf. I was/am highly impressed.
We won't know the results of my scans until next week. As soon as I get any info I will let everyone know.
Today Ive spent most of the day in bed. My joints are stiff which causes it hard to walk. I also have a headache thats just been nagging at me all day. (yes Ive taken meds). So in bed I lay. Only thing that helps is sleep. My eyes are blurry, so its harder and harder to read. Words just seem to slide together into a long black line. Sometimes they even wiggle! Gotta love what a brain can do.
I did manage to get some housework done yesterday. (I actually enjoy housework) I went to grab a shirt…and promptly realized my new banana republic shirt had shrunk. Round of applause……I had a dry clean only shirt that I didn't know about. That lovely shirt (worn once) now can fit an oddly shaped 7 yr old. On a brighter note I finally found some sunscreen that doesn't smell like sunscreen! its from Targets in house brand "up&up" and its just a little bottle labeled moisturizing cream with spf. I was/am highly impressed.
We won't know the results of my scans until next week. As soon as I get any info I will let everyone know.
February 24, 2014
Been a while….
I didn't realize that I've neglected my blogging duties. Ive still been not feeling great and mainly staying in bed. I haven't even been doing as much housework as I normally so. Ill admit Im pretty anal about how I keep my house. Lately Ive just loosened the reigns and just let it go. That said, I did have a good weekend.
Saturday morning we had a 'Mad Housewives Tea' 9 of my friends and family (women only) got together and had tea. It was on my wish list to have a fun frilly tea party. We had tea sandwiches, pretty teat pots, and tea cult, and even social tea. Its safe to say we all had a blast. We all love the men in our lives but this was a chance for us to have a couple hours to ourselves and be kid free for a bit. I wish I had taken a picture of the table, but here was the menu
Blueberry scones
vanilla scones
fruit skewers
cucumber sandwich
chicken salad sandwich
turkey and cheese sandwich
and then an assortment of deserts.
For teas we had a huge selection as well. My new favorite is "chocolate scone". It is as rich as a mocha, with none of the milk, sugar, or calories.
The tea party wiped me out. I got home around 2, and was woken up at 8. My husband said he thought I needed to sleep so just let me sleep. Thats how it is these days. After either an outing or event I go home and crash. So while its good when I get get out, the results are me sleeping for a looong time. Sometimes I feel like sleeping beauty. I feel like Im starting to sleep more than stay awake.
My eyes have gotten worse. I really struggle to see. Everything is blurry, and I frequently loose sight entirely out of my right eye. It makes it hard to blog or write. Ive also started been unsteady on my feet. My legs are getting weaker again. We just weaned off the steroids so my strength should go back up.
Ive been dealing with more and more splitting headaches latterly. All I do is put my cool mask on, and lay down with my eyes closed. Its the only way to make the pain go away. Food is back to being just ehh. Im rarely hungry anymore. So all that steroid weight is coming back off. Ill admit I gained 20lbs when they added the steroids. Im down a bit but working on dropping more.
So the good news is we got approval to get full body scans done!!!! They normally don't do this when a patient is on hospice. So Im special. We have some new symptoms that don't exactly mix. They want to find out whats going on in my tummy. They think it may be a tumor, I had one in my tummy before but the yervoy made it disappear. They are afraid that has come back, All I want to know is whats going on in three!!!! has my brain gotten better'? worse? whats the timeline look now??? So thats whats going on with me. I see the doctor and nurse tomorrow. We are going to set up scan dates and times at that time. They also want to run another urine test. To double check the last one?? I dont know… So until tomorrow…
Im gonna take another nap.
Saturday morning we had a 'Mad Housewives Tea' 9 of my friends and family (women only) got together and had tea. It was on my wish list to have a fun frilly tea party. We had tea sandwiches, pretty teat pots, and tea cult, and even social tea. Its safe to say we all had a blast. We all love the men in our lives but this was a chance for us to have a couple hours to ourselves and be kid free for a bit. I wish I had taken a picture of the table, but here was the menu
Blueberry scones
vanilla scones
fruit skewers
cucumber sandwich
chicken salad sandwich
turkey and cheese sandwich
and then an assortment of deserts.
For teas we had a huge selection as well. My new favorite is "chocolate scone". It is as rich as a mocha, with none of the milk, sugar, or calories.
The tea party wiped me out. I got home around 2, and was woken up at 8. My husband said he thought I needed to sleep so just let me sleep. Thats how it is these days. After either an outing or event I go home and crash. So while its good when I get get out, the results are me sleeping for a looong time. Sometimes I feel like sleeping beauty. I feel like Im starting to sleep more than stay awake.
My eyes have gotten worse. I really struggle to see. Everything is blurry, and I frequently loose sight entirely out of my right eye. It makes it hard to blog or write. Ive also started been unsteady on my feet. My legs are getting weaker again. We just weaned off the steroids so my strength should go back up.
Ive been dealing with more and more splitting headaches latterly. All I do is put my cool mask on, and lay down with my eyes closed. Its the only way to make the pain go away. Food is back to being just ehh. Im rarely hungry anymore. So all that steroid weight is coming back off. Ill admit I gained 20lbs when they added the steroids. Im down a bit but working on dropping more.
So the good news is we got approval to get full body scans done!!!! They normally don't do this when a patient is on hospice. So Im special. We have some new symptoms that don't exactly mix. They want to find out whats going on in my tummy. They think it may be a tumor, I had one in my tummy before but the yervoy made it disappear. They are afraid that has come back, All I want to know is whats going on in three!!!! has my brain gotten better'? worse? whats the timeline look now??? So thats whats going on with me. I see the doctor and nurse tomorrow. We are going to set up scan dates and times at that time. They also want to run another urine test. To double check the last one?? I dont know… So until tomorrow…
Im gonna take another nap.
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