First day of radiation is done. Only 14 more treatments to go. Thank goodness that radiation treatments don't hurt. Its just a quick in and out procedure. Im also blessed with good therapists. They are fun to see daily. That I think is an important quality. They have the best bedside manner.
Im still healing from surgery but overall doing pretty good. My scars are healing nicely, and each day its less tender. The only side effect I have right now is that my legs are very weak. I had to bring out the cane to walk with. If I were to walk any distance Id have to get my wheelchair out. Its crazy on how just a couple of weeks in bed has put me back to where I was needing assistance. The best way to describe it is that my knees just give way. I haven't fallen as I make sure to have Eric help me, and not push too far. I hate having to constantly go back and forth between sick/weak and strong/semi healthy.
So as for the rest of the week: I see the radiation doc wednesday. I see my tummy surgeon thursday, and if cleared start chemo friday. Woo hoo. How fun!
March 31, 2014
March 27, 2014
Say what!?
I wasn't expecting the new meds until next week. They arrived today. Im not to start them until I get the all clear from my surgeon next week, but they are here. I finally got to read all gritty side effects. A person never reads those thinking they will actually get one or all side effects. Too bad I know different. The last therapy they had me on I had every single one of the possible side effect.
As I read the possible effects the more worried and scared I get. The likelihood of the side effects are low, according to the doc. These are some serious effects. Back to ulcures, eyesight loss, weakness and more. The meds are covered in yellow with CHEMO DRUG written all over them and the packaging. Its going to be very hard for me to start this med. The only reason Im trying it is because I promised. I promised my family and myself I wouldn't give up. If there is an option I would try it. Ive just been they so much pain lately jumping back in is scary. More pain is scary.
So far I expect the doc to clear me. Im off the extra pain meds and feeling pretty good. I still have a little pain at my incision sites. Im also able to sleep laying flat now. Bending over still is a bit of a stretch, and I can't lift anything heavy. Overall I have healed quite well so far. Next week is wham all the new stuff starts. Radiation, Chemo etc.
I have no plans except to rest up and work on healing. Eating better has always been a priority in my house. We are keeping that up by going more natural diet. Since I can't eat much in one sitting its lots of little meals a day. Fruit, veggies etc. Feeling good on the inside helps me feel good all over.
March 20, 2014
The new plan
Another day another challenge. We saw the oncologist yesterday. Right now our plans are to talk to my Radiation oncologist and start radiation on my left tibia the first week of April. We then have a follow up appointment with my tummy doc to get the all healed all clear. If we get the all clear we are going to start a new new new drug just approved that is supposed to help knock out blood supply to cancer cells.
This come in pill form so I would have the therapy at home. Unlike chemo. If you remember the last pill therapy up me thru hell. Yes, I said HELL. Read back.. I had every side effect. I refuse to go through that again. This time we stop immediately if it starts to get really bad. This new drug can't make the cancer worse, it can only either do nothing, or cause it to get better. We agreed to try it because we have no other options other than not try. Like Ive said many times before, Im not quitting. We are in it for the long game. Terminal or no….This is not taking me easy. Im taking it with me. (as if in battle).
I will admit Im scared. Im scared of more pain. Im recovering from surgery in pain, unable to hold my son for the next few weeks, and this is the time Im relying on the strength of others. My family and friends. The idea of more pain up the road is very hard for me to be excited about. Then there is my family. Right there with me. Every step of the way.They are the only reason I can stay sane and focused these days.
My aunt stepped in yesterday to help watch little one. He is quite the little boy. Run run run. In those few hours I think he wore her out. I know he runs us ragged, someone he doesn't see daily?? yeah buddy, he's ready to play. I love that I have the family local that we can use in times off need. Thank you Aunt D! for watching Elliot again! He was soooo tired he even slept in.
Ill update you all again soon. As of now Im healing more and more daily. Its just a matter of eating more right now. I still just don't have the appetite I need.
This come in pill form so I would have the therapy at home. Unlike chemo. If you remember the last pill therapy up me thru hell. Yes, I said HELL. Read back.. I had every side effect. I refuse to go through that again. This time we stop immediately if it starts to get really bad. This new drug can't make the cancer worse, it can only either do nothing, or cause it to get better. We agreed to try it because we have no other options other than not try. Like Ive said many times before, Im not quitting. We are in it for the long game. Terminal or no….This is not taking me easy. Im taking it with me. (as if in battle).
I will admit Im scared. Im scared of more pain. Im recovering from surgery in pain, unable to hold my son for the next few weeks, and this is the time Im relying on the strength of others. My family and friends. The idea of more pain up the road is very hard for me to be excited about. Then there is my family. Right there with me. Every step of the way.They are the only reason I can stay sane and focused these days.
My aunt stepped in yesterday to help watch little one. He is quite the little boy. Run run run. In those few hours I think he wore her out. I know he runs us ragged, someone he doesn't see daily?? yeah buddy, he's ready to play. I love that I have the family local that we can use in times off need. Thank you Aunt D! for watching Elliot again! He was soooo tired he even slept in.
Ill update you all again soon. As of now Im healing more and more daily. Its just a matter of eating more right now. I still just don't have the appetite I need.
March 18, 2014
Day at a time
Well today its easier to get in and out of bed. Ive been walking the house too. I even managed to do half a load of laundry. The bending over is what kills me. Ouch! They had told me to either remove the bandages or let them just come off. Whatever I wanted. Well, I removed them. I discovered once again, Im allergic to the adhesive on band aids. Add blisters to my wounds. I have 7 incisions the doctor did, and now multiple blisters where the bandages were. Go me.
My appetite still isn't back. Im eating like a bird. Which is the diet my doc has me on. To be fair I don't feel like eating much other than his diet. I see food and it just reminds me of all the holes in my stomach and kinda wince.
I have an appointment with my oncologist tomorrow. Im sure they will want to start radiation on my leg asap, or something similar. I wanted to wait a bit to heal before messing with daily visits to radiation. I know it seems others have the theory that I need to start therapy asap. I just am worn out. Im not even 1 week out from surgery, can't sleep laying down, and can hardly walk. But they want to start treatment. I just feel like I need a week or two of healing before we start damaging another part of my body. The side effects aren't bad for just the leg, but still. I feel like my body would heal better if I give it a few days in between.
Either way Ill see what the doc has to say tomorrow and let y'all know what I come up with. Well what WE come up with.. Ill let everyone know.
My appetite still isn't back. Im eating like a bird. Which is the diet my doc has me on. To be fair I don't feel like eating much other than his diet. I see food and it just reminds me of all the holes in my stomach and kinda wince.
I have an appointment with my oncologist tomorrow. Im sure they will want to start radiation on my leg asap, or something similar. I wanted to wait a bit to heal before messing with daily visits to radiation. I know it seems others have the theory that I need to start therapy asap. I just am worn out. Im not even 1 week out from surgery, can't sleep laying down, and can hardly walk. But they want to start treatment. I just feel like I need a week or two of healing before we start damaging another part of my body. The side effects aren't bad for just the leg, but still. I feel like my body would heal better if I give it a few days in between.
Either way Ill see what the doc has to say tomorrow and let y'all know what I come up with. Well what WE come up with.. Ill let everyone know.
March 15, 2014
Another surgery experience down
Here we are not 24 hrs from surgery. I'm admittedly cranky due to not enough pain meds. Eric and I started adding up dosage and I take more pain killers daily than they are giving me here. No wonder I hurt!
The surgery went well. They said the tumor was a monster. It had even grown since monday! Doc said we would've has a huge issue if we had waited or not sought treatment. I'm glad we made the correct choice.
They did the surgery laproscopic. So I have 7 holes in my tummy. I tole Eric "well I'm not wearing a bikini this year! Oh well. It could have been worse. Much much worse.
I've actually managed to get up 3x and walk a bit today. (With help) and they are letting me eat real foos. They expect to send me home tomorrow. I'll post more then. Love you guys.
March 11, 2014
Roller Coaster Ride.
Went in yesterday for my final mapping for radiation. They got me all marked up and prepped for my first treatment. (which we had to schedule for a few days out). I then get a phone call a few hours later that my radiation has been cancelled, and they are getting me into a surgeons office asap.
The surgeons office calls almost immediately after we hang up with the doctor, and they want to see us once again ASAP. So off we go…
We find out that in just the 1 week from my first scan to the scan that morning the tumor has grown quite a bit. It is at risk of causing an obstruction in my bowel. So they set up surgery for friday morning. Meanwhile like clockwork I can't keep any food down. They had me an appointment at the hospital for pre-op today that we rescheduled due to me not being able to leave the floor of the bathroom. If it gets any worse we were told to call the doc and he would move up surgery. (for fear of a blockage that could happen anytime)
So that tummy ache Ive had for the past few weeks? tumor! While I loved the hospice nurse, I wish we would have found out sooner. Granted, had hospice not told us to go get a scan we wouldn't have figured this out until I got very very ill. Just amazes me how aggressive this cancer is, and how widespread. Leg, tummy, head…. Crazy.
My surgery is on friday with a 2-3 day hospital stay. Maybe longer depending on how I do they are going to try to do it with a robot so minimal incisions. Lets hope they will be able to do it that way.
Until then Im in bed, staying close to the bathroom. And sleeping a lot. Seems like I will be on a liquid diet for the rest of the week. Talk about a crummy weight loss plan.
The surgeons office calls almost immediately after we hang up with the doctor, and they want to see us once again ASAP. So off we go…
We find out that in just the 1 week from my first scan to the scan that morning the tumor has grown quite a bit. It is at risk of causing an obstruction in my bowel. So they set up surgery for friday morning. Meanwhile like clockwork I can't keep any food down. They had me an appointment at the hospital for pre-op today that we rescheduled due to me not being able to leave the floor of the bathroom. If it gets any worse we were told to call the doc and he would move up surgery. (for fear of a blockage that could happen anytime)
So that tummy ache Ive had for the past few weeks? tumor! While I loved the hospice nurse, I wish we would have found out sooner. Granted, had hospice not told us to go get a scan we wouldn't have figured this out until I got very very ill. Just amazes me how aggressive this cancer is, and how widespread. Leg, tummy, head…. Crazy.
My surgery is on friday with a 2-3 day hospital stay. Maybe longer depending on how I do they are going to try to do it with a robot so minimal incisions. Lets hope they will be able to do it that way.
Until then Im in bed, staying close to the bathroom. And sleeping a lot. Seems like I will be on a liquid diet for the rest of the week. Talk about a crummy weight loss plan.
March 10, 2014
Radiation Prep-Day
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.
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 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! )
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