I thought I would type a quick update on my blog since some people do not read my posts on Facebook but rather on here. Not much has been happening really. This week I started my second round of Temodar, the chemo brain drug. This time I have done fairly well with it - making sure to take the nausea medicine. Last night (Thursday), I did get nauseous and sick once but that wasn't too bad.
Today I had an appointment with the oncologist. Everything is looking good. My bilirubin was a little high so they will be watching that before I start my 3rd Temodar treatment in March. They also gave me a bag of fluids as I was probably a little dehydrated. (I didn't realize that can also make you feel nauseous.) I will have a PET scan in early March and will get the results at my next appointment with my oncologist. My next MRI will not be until the end of March/beginning of April.
Other than being VERY tired lately, I am doing good. I have nights of good sleep and more nights of not so good sleep where I am up for a couple of hours in the middle of the night. I take a lot of morning/afternoon naps lately!
Hope tonight is an uneventful fifth (and last) day of meds for this month!
I believe!
Jodi
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Friday, February 24, 2012
Monday, February 6, 2012
Believing in Miracles - Am I In a Dream World Today? - 02/06/2012
I had an appointment with my oncologist this afternoon. I don't know if this blog is going to make a whole lot of sense as both Kurt and I are kindof in shock so I will try to do the best that I can. I'll give a little history and such with all that has been happening since my last MRI plus news today - hope it makes sense.
In November before we went to Florida, I had a STAT MRI on Wednesday before Thanksgiving due to some seizure activity I was having. We were told that I had 8 brain tumors. Once we returned, I began full brain radiation which ended right before the New Year. In January I had a PET scan which showed that both my hip and liver tumors are still decreasing in size.
Move to January 23rd when I started Temodar, the brain tumor chemo pill. This is the one that is taken 5 days on and 24 days off. I took the 5 days of pills (of which I was vomiting the first night and didn't have any other problems the rest of the week from it because I started taking anti-nausea meds with it at night). Beginning @ Wednesday that week, I started having some other problems. I believe some of it was related to getting dehydrated, having thrush and not wanting to eat/drink, etc. On Saturday morning Kurt called the ambulance to take me to MGH. I had a CAT scan which showed that I had brain swelling. I was in the hospital for a few days and was put back on brain swelling medications amongst many other things. I started to feel a little better each day and was discharged for my oncology appointment that Monday.
The oncologist decided that day to start me on the new BRAF medication since it appeared that there was issues continuing with my brain. On Tuesday last week I had another MRI. I started the new medication yesterday (4 pills, 2 times per day) and took it again this morning. When we met with the oncologist today, she started reading the MRI reports for both last Tuesday as well as in November. Of the 8 tumors that were shown in the MRI report in November, she wrote down 4 of them that are still there. When thinking about it afterwards, we realized she actually wrote down that one was GONE so there are only 3 tumors still there. These are the same tumors that were there in November. Of those 3 tumors, they have all gone down in size. The pituatary tumor that they had talked was very uncommon to have is not there as well. We asked how the tumors shrunk and she indicated it had to have been from either the gamma knife radiation in Detroit in November or the full brain radiation in Marquette in December. She said she would contact the radiologist that wrote the reports to vary the information but said that she is an excellent radiologist so thought the reports were correct. The oncologist decided that I should stop the BRAF medications (this is what she would like to use as a last option if possible) and go back to taking the Temador on February 20th.
(I know it probably is as confusing to all of you as us... but we are BLESSED to have some GREAT news after lots of not so great news!)
So, why was the news so grim when I was in hospitalized ... I was having some sort of brain problems, obviously! The oncologist said that it had to do with brain swelling and activity so we will be tweeking some medications they put me on so that I hopefully will not continue to have problems.
It's a GREAT day... and, I BELIEVE!
In November before we went to Florida, I had a STAT MRI on Wednesday before Thanksgiving due to some seizure activity I was having. We were told that I had 8 brain tumors. Once we returned, I began full brain radiation which ended right before the New Year. In January I had a PET scan which showed that both my hip and liver tumors are still decreasing in size.
Move to January 23rd when I started Temodar, the brain tumor chemo pill. This is the one that is taken 5 days on and 24 days off. I took the 5 days of pills (of which I was vomiting the first night and didn't have any other problems the rest of the week from it because I started taking anti-nausea meds with it at night). Beginning @ Wednesday that week, I started having some other problems. I believe some of it was related to getting dehydrated, having thrush and not wanting to eat/drink, etc. On Saturday morning Kurt called the ambulance to take me to MGH. I had a CAT scan which showed that I had brain swelling. I was in the hospital for a few days and was put back on brain swelling medications amongst many other things. I started to feel a little better each day and was discharged for my oncology appointment that Monday.
The oncologist decided that day to start me on the new BRAF medication since it appeared that there was issues continuing with my brain. On Tuesday last week I had another MRI. I started the new medication yesterday (4 pills, 2 times per day) and took it again this morning. When we met with the oncologist today, she started reading the MRI reports for both last Tuesday as well as in November. Of the 8 tumors that were shown in the MRI report in November, she wrote down 4 of them that are still there. When thinking about it afterwards, we realized she actually wrote down that one was GONE so there are only 3 tumors still there. These are the same tumors that were there in November. Of those 3 tumors, they have all gone down in size. The pituatary tumor that they had talked was very uncommon to have is not there as well. We asked how the tumors shrunk and she indicated it had to have been from either the gamma knife radiation in Detroit in November or the full brain radiation in Marquette in December. She said she would contact the radiologist that wrote the reports to vary the information but said that she is an excellent radiologist so thought the reports were correct. The oncologist decided that I should stop the BRAF medications (this is what she would like to use as a last option if possible) and go back to taking the Temador on February 20th.
(I know it probably is as confusing to all of you as us... but we are BLESSED to have some GREAT news after lots of not so great news!)
So, why was the news so grim when I was in hospitalized ... I was having some sort of brain problems, obviously! The oncologist said that it had to do with brain swelling and activity so we will be tweeking some medications they put me on so that I hopefully will not continue to have problems.
It's a GREAT day... and, I BELIEVE!
Tuesday, January 31, 2012
A Weekend Ambulance Ride, A Trip to the ER, A Few Overnights at the Hospital & A Visit with My Oncologist - 1/30/2012
I'm typing this a day later than what I should have started it. It all begins with me starting the Temodar medication that I started last Monday night (two pills in the evenings of each day) and ended on Friday evening. I started with my first dosage and had a very rough late evening / early morning on Monday - got very nauseous, took some nausea medicine with water and then proceeded to vomit a few times. Tuesday-Thursday I felt a little better ... took nausea meds about 1-2 hours before taking the medicines all four of the additional days. I slept for about 2 1/2 days - I didn't have any ideas what was really going on.
Skip ahead to Saturday morning. Kurt contacted the ambulance to bring me to the Marquette Emergency Room. I seriously thought it was Wednesday - I skipped MANY days. The ambulance got to our house @ 10 a.m. The paramedics/EMS staff brought the stretcher in, got me connected and I started getting the dry heaves in our house. They finally got me out in the ambulance, got an IV started and we were on the way to the hospital.
Once at the hospital, I wanted water as I was really dehydrated but they couldn't give me that right away. The doctor finally gave me water. He ordered a CAT scan. I'm not sure what time it was but the doctor told me that I could either go home if I ate lunch/dinner or I would get brought up to the 6th floor for a day or more. I wasn't all that interested in eating yet so they did request a room for me on the 6th floor. Once I was up on that floor, I did eat a bit more and drink a little bit.
I progressed a little each day. On Sunday, I took a shower which felt good. My cousin and I took a walk down the hallway and back to my room. More tests were done - lots of blood work, blood sugar checks and insulin shots, different drugs were added/changed, continual monitoring via IVs, etc. There was a lot going on that I quite cannot remember what they were doing fully. We did get discharged on Monday by 9 a.m. so that I could then go to the appointment with my oncologist.
She was aware of all that was going on this weekend and she had all of the paperwork from all of the tests. After discussing everything that we went through, it sounds like she thinks I was getting sick from seizure activity and not the new temodar drug. She suggests that I start the new BRAF inhibitor drug (zelboraf) - medication to take each day, twice a day. She also wanted a MRI done as soon as possible so we can see what the results from the prior MRI looks like now.
The MRI was done today, Tuesday, at 9:45. We won't have information on this until our next appointment with my oncologist, which is next Monday afternoon. Also, after a search for a pharmacy with the new medication, Kurt had to work with the oncology office to try to figure out a place locally to get the medications. He thinks he will be able to get it by this weekend.
I was less than coherent and now reading some of the things I said, I am sorry! I definitely didn't know what I was doing or saying! I'm glad to be home and glad to be getting better (and trying harder to make more sense)!
Thank you to everyone for your htoughts, prayers, concerns, love, etc!!!!
I have lots of wonderful friends and family!
I believe!
Love, Jodi
Skip ahead to Saturday morning. Kurt contacted the ambulance to bring me to the Marquette Emergency Room. I seriously thought it was Wednesday - I skipped MANY days. The ambulance got to our house @ 10 a.m. The paramedics/EMS staff brought the stretcher in, got me connected and I started getting the dry heaves in our house. They finally got me out in the ambulance, got an IV started and we were on the way to the hospital.
Once at the hospital, I wanted water as I was really dehydrated but they couldn't give me that right away. The doctor finally gave me water. He ordered a CAT scan. I'm not sure what time it was but the doctor told me that I could either go home if I ate lunch/dinner or I would get brought up to the 6th floor for a day or more. I wasn't all that interested in eating yet so they did request a room for me on the 6th floor. Once I was up on that floor, I did eat a bit more and drink a little bit.
I progressed a little each day. On Sunday, I took a shower which felt good. My cousin and I took a walk down the hallway and back to my room. More tests were done - lots of blood work, blood sugar checks and insulin shots, different drugs were added/changed, continual monitoring via IVs, etc. There was a lot going on that I quite cannot remember what they were doing fully. We did get discharged on Monday by 9 a.m. so that I could then go to the appointment with my oncologist.
She was aware of all that was going on this weekend and she had all of the paperwork from all of the tests. After discussing everything that we went through, it sounds like she thinks I was getting sick from seizure activity and not the new temodar drug. She suggests that I start the new BRAF inhibitor drug (zelboraf) - medication to take each day, twice a day. She also wanted a MRI done as soon as possible so we can see what the results from the prior MRI looks like now.
The MRI was done today, Tuesday, at 9:45. We won't have information on this until our next appointment with my oncologist, which is next Monday afternoon. Also, after a search for a pharmacy with the new medication, Kurt had to work with the oncology office to try to figure out a place locally to get the medications. He thinks he will be able to get it by this weekend.
I was less than coherent and now reading some of the things I said, I am sorry! I definitely didn't know what I was doing or saying! I'm glad to be home and glad to be getting better (and trying harder to make more sense)!
Thank you to everyone for your htoughts, prayers, concerns, love, etc!!!!
I have lots of wonderful friends and family!
I believe!
Love, Jodi
Thursday, January 12, 2012
Love from My Sweet Nephew (and Update) - 01/12/2012
I got another text message just a little bit ago with a picture and message that said, "Andrew loves you too!" My 5-year-old nephew, Andrew (or Boocho as we call him), shaved his head today! What a sweetheart - and I love him so much!!!!
Kurt is finally on the mend! We have been relaxing quite a bit but the past two days we spent out and about doing grocery shopping, picking up medications at the pharmacy, etc.
Next step for me - temodar pills (brain tumor chemo pills) will start on Monday, January 23rd (taken at night).
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| Boocho with his newly shaved head - what a cutie!!! |
Kurt is finally on the mend! We have been relaxing quite a bit but the past two days we spent out and about doing grocery shopping, picking up medications at the pharmacy, etc.
Next step for me - temodar pills (brain tumor chemo pills) will start on Monday, January 23rd (taken at night).
Saturday, January 7, 2012
Brotherly Love - 1/7/2012
I forgot to blog this so I thought I would do it quickly...
On New Years Eve when I talked to my brother, John, I told him that I was losing my hair and it looked like I would have to shave it off. He said I should contact my dear friend Casey to cut/shave it and I said it was coming out SO quickly that I wanted to just get it off and I thought I could do it myself. Well, I didn't realize that he called Casey and said he wanted to shave his hair off for me again! He went to see her yesterday (Friday, January 6th) and afterwards I got a text message that said "I Love You" with this picture:
I sent him a text message back that I love him too... and he better get some winter hats because I know how cold my head is! :)
Thank you, John, for your love and support!
On New Years Eve when I talked to my brother, John, I told him that I was losing my hair and it looked like I would have to shave it off. He said I should contact my dear friend Casey to cut/shave it and I said it was coming out SO quickly that I wanted to just get it off and I thought I could do it myself. Well, I didn't realize that he called Casey and said he wanted to shave his hair off for me again! He went to see her yesterday (Friday, January 6th) and afterwards I got a text message that said "I Love You" with this picture:
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| John's New Haircut - 1/6/2012 |
Thank you, John, for your love and support!
Yesterday's Crazy Morning Update - 1/7/2012
For those who may not have heard... Friday, December 6th started as a crazy morning. Kurt woke me up at approximately 4 a.m. coming into the bedroom from the living room. He had his blanket wrapped around him and he was shaking with a fever. When I got the thermometer and checked his temp, it was @101 degrees. After giving him tylenol, getting him in the shower (after many attempts as he said he was so cold he thought he would have a heart attack if he went in there) and listening to him talk, sing, and do things that were unlike himself AND his temp going up to 103.3 degrees, I called 911 along with both of our parents. He was brought to the hospital and it was determined that he has bacterial pneumonia in his left lung. He was sent home with lots of medications, told to get rest and relax.
I would like to personally thank Bell EMS and Negaunee Township Fire Department EMS! While some of the things Kurt said and did are now a little funny, it was very scary at that time and I am glad we made the call to 911. Being an EMT himself, I don't think he really wanted me to call. And, for everyone who called and sent emails/texts about being able to help if we ever need it, THANK YOU! At the moment, I knew it was time to call 911 instead of waiting for someone else to come and get him.... but I do know that we have lots of family and friends who would be here in a moments notice. THANK YOU ALL!!!!
Kurt had told the ER doc about my medical history. He told me that I need to be VERY careful and if I have ANY symptoms to get to the ER right away. I had an appointment with my oncologist in the morning anyway so I told him I would talk with her about everything as well.
After getting Kurt home, my parents brought me to my oncology appointment. My oncologist said my blood work looked really good. I spoke to her about both my left leg spasms from a few days ago as well as Kurt and how that could affect me. Regarding the leg spasms, it could have been low potassium but my potassium was currently alittle above normal - I have been eating LOTS of bananas though and also making sure to drink LOTS of water instead of pop. I haven't had any problems since but will let her know if happens again. As far as the bacterial pneumonia, she started me on an antibiotic as a precaution since I already have a cold. She also wanted me to start on the brain tumor chemo drug, Temodar. (She is also weening me off of the brain swelling medication over this next week.) Due to Kurt being sick, she would like me to wait until January 23rd to start the chemo medication as she doesn't want my blood counts to drop (as they probably will some) and my immunity to go down while he is sick. I will see her the following week and then will have another MRI the second week of February.
Since I get questions regarding this medication, here is some information that I found on the internet:
Another way to take TEMODAR is to take it one time each day for 5 days in a row only, and then you stop taking it for the next 23 days. This is one cycle of treatment (28 days). Your doctor will watch your progress on TEMODAR and decide how long you should take it. You might take TEMODAR until your tumor gets worse or for possibly up to 2 years.
Thank you all for your thoughts, prayers, concerns, etc. Kurt and I are having a low-key weekend. The kids are each spending the weekend at a grandparents' house.
I will try to update in the next week or two. We believe!!!More information on temodar can be found at http://www.http//www.merck.com/product/#T
I would like to personally thank Bell EMS and Negaunee Township Fire Department EMS! While some of the things Kurt said and did are now a little funny, it was very scary at that time and I am glad we made the call to 911. Being an EMT himself, I don't think he really wanted me to call. And, for everyone who called and sent emails/texts about being able to help if we ever need it, THANK YOU! At the moment, I knew it was time to call 911 instead of waiting for someone else to come and get him.... but I do know that we have lots of family and friends who would be here in a moments notice. THANK YOU ALL!!!!
Kurt had told the ER doc about my medical history. He told me that I need to be VERY careful and if I have ANY symptoms to get to the ER right away. I had an appointment with my oncologist in the morning anyway so I told him I would talk with her about everything as well.
After getting Kurt home, my parents brought me to my oncology appointment. My oncologist said my blood work looked really good. I spoke to her about both my left leg spasms from a few days ago as well as Kurt and how that could affect me. Regarding the leg spasms, it could have been low potassium but my potassium was currently alittle above normal - I have been eating LOTS of bananas though and also making sure to drink LOTS of water instead of pop. I haven't had any problems since but will let her know if happens again. As far as the bacterial pneumonia, she started me on an antibiotic as a precaution since I already have a cold. She also wanted me to start on the brain tumor chemo drug, Temodar. (She is also weening me off of the brain swelling medication over this next week.) Due to Kurt being sick, she would like me to wait until January 23rd to start the chemo medication as she doesn't want my blood counts to drop (as they probably will some) and my immunity to go down while he is sick. I will see her the following week and then will have another MRI the second week of February.
Since I get questions regarding this medication, here is some information that I found on the internet:
Another way to take TEMODAR is to take it one time each day for 5 days in a row only, and then you stop taking it for the next 23 days. This is one cycle of treatment (28 days). Your doctor will watch your progress on TEMODAR and decide how long you should take it. You might take TEMODAR until your tumor gets worse or for possibly up to 2 years.
Thank you all for your thoughts, prayers, concerns, etc. Kurt and I are having a low-key weekend. The kids are each spending the weekend at a grandparents' house.
I will try to update in the next week or two. We believe!!!More information on temodar can be found at http://www.http//www.merck.com/product/#T
Monday, January 2, 2012
Hair Today, Gone Tomorrow - 1/2/2012
At discharge from radiation, they warned me that I might still lose my hair. Well, when I got in the shower on New Years Eve, my hair was coming out in clumps. I must admit that it caught me a little by surprise and made me a little more emotional than I thought I'd be. On New Years Day, I decided it was time to shave my head as hair was getting EVERYWHERE! So, last night I took the shaver in the bathroom and Ashley and I shaved most of the hair off. Then I went in the shower and took a razor to what Kurt and I could get.
Since it was getting everywhere and starting to bug me, it was nice to get it off! I was a bit surprised by how my craniotomy scars look - not as bad as I expected I guess! Today I hauled out my scarves and hats! And, now that it is winter in the ole U.P., I will be going out to purchase some winter hats... something I have RARELY ever worn (except for the Western Snowplow hat that I wear when snowblowing or winter activities). I even woke up this morning thinking that my head was really cold since we have our ceiling fan on all the time - might wear a hat to bed tonight! :)
And the other thought that crossed my mind is that now if I start a chemo med, I'll never know if I'd lose my hair but that's okay! I suppose since I still have eyebrows and eyelashes, I will know by that. :)
Here's a picture I took after shaving in the shower:
Since it was getting everywhere and starting to bug me, it was nice to get it off! I was a bit surprised by how my craniotomy scars look - not as bad as I expected I guess! Today I hauled out my scarves and hats! And, now that it is winter in the ole U.P., I will be going out to purchase some winter hats... something I have RARELY ever worn (except for the Western Snowplow hat that I wear when snowblowing or winter activities). I even woke up this morning thinking that my head was really cold since we have our ceiling fan on all the time - might wear a hat to bed tonight! :)
And the other thought that crossed my mind is that now if I start a chemo med, I'll never know if I'd lose my hair but that's okay! I suppose since I still have eyebrows and eyelashes, I will know by that. :)
Here's a picture I took after shaving in the shower:
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| Not the greatest of pics but shows you what I look like anyway! And, wow that is one big NOGGIN! (Well, my face is bigger than my head - partly due to meds and partly due to fat!) Now I am wondering - are my ears, my nose or my glasses crooked? :) |
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