Some of you may know that today was a long awaited day for us; it was the first time we met with the oncologist after radiation ended and a new MRI was taken (on July 11th). I have been waiting for this appointment anxiously for over a month. So without further ado... here's what we know:
First of all, both radiation and the chemo drug, Temodar, change the way the brain looks on an MRI. With that being said, it is very difficult to know exactly what is what by just looking at an MRI. We do know, though, that the swelling and stuff near the site where the surgery took place has decreased since the last MRI which was taken the day after the second surgery, so that is good. We also know that there are some areas of my love's brain that look different than "normal." Again, this could be from radiation, chemo, scar tissue, or cancer. The oncologist we have isn't the greatest at understanding the actual MRI film/scan, so he has a radiologist look at it and then reads their report. Tomorrow, we see the neurosurgeon who is better at understanding the film/scan thing, so we may get additional information tomorrow. At this point, though, the plan is that my love will start taking a higher dose of the chemo drug every day for 5 days and then have 23 days off before starting up another cycle. This will start sometime soon after tomorrow's meeting with the neurosurgeon as long as the neurosurgeon agrees that this is the best course of action. So yeah, a little less than clear and definite, but we're thankful there is no obvious major growth or issues. The MRI that was taken on the 11th will serve as something to compare future MRIs to, in order to make sure no growth is occurring and that the stuff that looks "different" is really just from the radiation/chemo/surgery/etc.
So, that's the basics from this morning's meeting. In other news, my love and I signed up today to participate in the "Miles for Hope: Move Towards A Cure" event that will be taking place in Grand Rapids on August 4th. We will be doing the one mile walk event. The event is a fundraiser for brain tumor/cancer research. If you'd like to check out my website for that event, you can find it at http://www.braintumorevents.org/faf/donorReg/donorPledge.asp?ievent=1011144&supId=363468200. My love's parents will be participating in the 5k run/walk event.
Also, my love and I are hoping to make a trip to Milwaukee before the semester starts, so we're trying to work out those details and will hopefully have more info soon.
Sorry I've not been the greatest at keeping this blog updated, it's really been a bit of a waiting game recently.
Wednesday, July 25, 2012
Thursday, July 5, 2012
Frozen Custard... Finally!
My love had been saying for quite a while now that once radiation ended, we should celebrate with frozen custard. For one reason or another this did not happen until today.
Sadly, frozen custard is not nearly as popular and prevalent here as it is in Milwaukee, but we made do as best we could by going to Culver's. The custard was quite tasty, made even sweeter by the knowledge that the hurdle of radiation is over.
So, if you're looking for a reason to enjoy the tasty treat of frozen custard, just tell yourself that you are joining in our celebration! :)
Sadly, frozen custard is not nearly as popular and prevalent here as it is in Milwaukee, but we made do as best we could by going to Culver's. The custard was quite tasty, made even sweeter by the knowledge that the hurdle of radiation is over.
So, if you're looking for a reason to enjoy the tasty treat of frozen custard, just tell yourself that you are joining in our celebration! :)
Tuesday, June 26, 2012
Let's Celebrate!
Today, June 26th, marks the last day of my love's radiation treatment and first round of chemotherapy. This is very exciting for everyone who loves and cares about the love of my life.
Daily chemotherapy mixed with five days a week of radiation for six weeks is far from easy. My love describes treatment as "uncomfortable." I can't imagine it being anything other than uncomfortable when one's head is squashed inside a mask that is bolted to a wooden board that you have to lay on without moving for 15 to 30 minutes per treatment. My love has been very strong and brave throughout this process and has complained minimally, always managing to find ways to look on the bright side of things. I've said it before, and it has certainly not changed; my love inspires me.
Today is also a little scary. It marks the end of one of the first battles, but we won't know until late July what exactly we still have to face to win the war. Which means that the next month will be a nerve-wracking waiting game. My love stops taking the chemo pill after tonight and, as far as we know, will not start a new chemo regimen until after we see the oncologist on July 25th. Of course, the radiation and chemo stay in one's system for a while, so it will still be fighting the cancer cells, and my love will continue getting stronger through various therapies, rest, and eating, allowing the body to continue to heal. Yet, it is still hard at times to know we will have more time on our hands because we won't be going to daily radiation appointments. With radiation, we had a routine, it was exhausting and at times hectic, but still a sense of normal. Now we have to find a new normal, a waiting normal, as we wait for the results of the MRI and know what else we're facing and are given a new plan of action. I know we can find a new normal, it just may take a little adjusting.
In the midst of trying to find this new normal, I am taking some time to visit my family in Iowa. I had originally planned to do this at the end of July, but I now think that time period may not be the best, so I will leave tomorrow and return before the fourth. It is extremely hard for me to leave my love, but I know I want and need to see my family and that my love is in very good and capable hands with her family. It's just weird to think about missing physical/occupational/speech therapy sessions and not being physically there for several days. I am trying to quell the "what-ifs" though and let go so I can enjoy my family.
One more interesting thing we found out about yesterday... there is going to be a 5k walk/run in support of brain tumor/cancer research in Grand Rapids on August 4th. I am planning on signing up soon to participate. I have to talk with my love and my love's family, but I'm hoping we can form a "Team Sundheimer" in honor of my love and the fight my love is waging against this disease. I know my love intends to be there and participate as well, which is really awesome! I will post more information about it and how to get involved, if you so desire, as soon as we figure out what exactly we're doing.
But yeah, most important thing today is the celebration of the end of a significant battle in this war. A celebration of my love's strength and positive attitude. Bring on the frozen custard!
Daily chemotherapy mixed with five days a week of radiation for six weeks is far from easy. My love describes treatment as "uncomfortable." I can't imagine it being anything other than uncomfortable when one's head is squashed inside a mask that is bolted to a wooden board that you have to lay on without moving for 15 to 30 minutes per treatment. My love has been very strong and brave throughout this process and has complained minimally, always managing to find ways to look on the bright side of things. I've said it before, and it has certainly not changed; my love inspires me.
Today is also a little scary. It marks the end of one of the first battles, but we won't know until late July what exactly we still have to face to win the war. Which means that the next month will be a nerve-wracking waiting game. My love stops taking the chemo pill after tonight and, as far as we know, will not start a new chemo regimen until after we see the oncologist on July 25th. Of course, the radiation and chemo stay in one's system for a while, so it will still be fighting the cancer cells, and my love will continue getting stronger through various therapies, rest, and eating, allowing the body to continue to heal. Yet, it is still hard at times to know we will have more time on our hands because we won't be going to daily radiation appointments. With radiation, we had a routine, it was exhausting and at times hectic, but still a sense of normal. Now we have to find a new normal, a waiting normal, as we wait for the results of the MRI and know what else we're facing and are given a new plan of action. I know we can find a new normal, it just may take a little adjusting.
In the midst of trying to find this new normal, I am taking some time to visit my family in Iowa. I had originally planned to do this at the end of July, but I now think that time period may not be the best, so I will leave tomorrow and return before the fourth. It is extremely hard for me to leave my love, but I know I want and need to see my family and that my love is in very good and capable hands with her family. It's just weird to think about missing physical/occupational/speech therapy sessions and not being physically there for several days. I am trying to quell the "what-ifs" though and let go so I can enjoy my family.
One more interesting thing we found out about yesterday... there is going to be a 5k walk/run in support of brain tumor/cancer research in Grand Rapids on August 4th. I am planning on signing up soon to participate. I have to talk with my love and my love's family, but I'm hoping we can form a "Team Sundheimer" in honor of my love and the fight my love is waging against this disease. I know my love intends to be there and participate as well, which is really awesome! I will post more information about it and how to get involved, if you so desire, as soon as we figure out what exactly we're doing.
But yeah, most important thing today is the celebration of the end of a significant battle in this war. A celebration of my love's strength and positive attitude. Bring on the frozen custard!
Friday, June 15, 2012
Movin' Right Along
Well, I have been slacking with updates once again!
Things are continuing to go pretty well. Yes, there are some days with more pain and/or fatigue and/or nausea than others, but overall, my love has been feeling fairly well and hanging in there marvelously.
We are down to 7 more radiation treatments, with the last day of treatment still scheduled for June 26th. Can anyone say "Party!"? An MRI is scheduled for July 11th to find out how the radiation went, but we won't hear about the results until we meet with the oncologist 2 weeks later on the 25th. So that will be a couple of nerve wracking weeks, but I'm sure it will be fine.
My love's poor incision seems to be infected a little. My love hasn't been running a fever or anything. But there was greenish oozing stuff coming out of part of it yesterday. So today a nurse and a doctor looked at it today and prescribed an antibiotic, so that should nip any problems in the bud.
So yeah, lots of stuff coming up, but we're keeping busy in the meantime between 6 hours worth of physical/speech/occupational therapy appointments each week and radiation every weekday, plus other appointments and meetings and stuff periodically.
Sorry this is kind of a quick update, but my love and I are off to Gilda's for a 20's and 30's Social Night at Gilda's Club consisting of a barbecue, games, and socializing with other young people in similar situations. So yeah, should be fun! I'll try to update more often.
Things are continuing to go pretty well. Yes, there are some days with more pain and/or fatigue and/or nausea than others, but overall, my love has been feeling fairly well and hanging in there marvelously.
We are down to 7 more radiation treatments, with the last day of treatment still scheduled for June 26th. Can anyone say "Party!"? An MRI is scheduled for July 11th to find out how the radiation went, but we won't hear about the results until we meet with the oncologist 2 weeks later on the 25th. So that will be a couple of nerve wracking weeks, but I'm sure it will be fine.
My love's poor incision seems to be infected a little. My love hasn't been running a fever or anything. But there was greenish oozing stuff coming out of part of it yesterday. So today a nurse and a doctor looked at it today and prescribed an antibiotic, so that should nip any problems in the bud.
So yeah, lots of stuff coming up, but we're keeping busy in the meantime between 6 hours worth of physical/speech/occupational therapy appointments each week and radiation every weekday, plus other appointments and meetings and stuff periodically.
Sorry this is kind of a quick update, but my love and I are off to Gilda's for a 20's and 30's Social Night at Gilda's Club consisting of a barbecue, games, and socializing with other young people in similar situations. So yeah, should be fun! I'll try to update more often.
Tuesday, May 29, 2012
Starting to Find a Routine... Hopefully
Sorry I've not written lately. I guess in some ways that is a good sign, nothing too drastic to report.
Anyway, this last week or so has been quite busy, but in a way where things seem to be fairly regularly scheduled and expected. Yes, some days are better for my love than others, both physically and emotionally, but overall we seem to be doing alright.
My love, my love's parents, and I all had the opportunity to attend a brain tumor support/networking group at Gilda's Club last Monday. It was really neat and helpful, I think, as well as a bit difficult. It was certainly inspiring to hear stories of people that had brain tumors and are now cancer free and doing well, but scary to hear of those who have had recurrences after doing well. It was nice, though, to talk with people who really understand what you are going through because they have gone through it or are going through it now. It was really neat too to have "cancer warriors" (I saw that term on a shirt and really liked it) as well as those supporting the cancer warriors all in a group together. Overall, I really appreciated the group and I'm sad it only meets once a month.
Last week my love was also evaluated for occupational, physical, and speech/cognitive therapies with the outpatient program my love is going through. Many of the evaluation activities were quite tough, I don't think I would have done much better, if any better, than my love did, especially on the speech/cognitive stuff. We still haven't heard back from the outpatient program for the schedule, but they suggested 8-12 weeks, 2 times per week for each of the therapies. They suggested doing all three therapies back to back twice a week, but my love would rather not have OT and PT on the same day because of a lack of energy right now, which I think is very smart. You don't want to be so tried for one of the hours of therapy that you get nothing out of it or push yourself to hard.
We did lots of stuff with my love's family (immediate and extended) over the holiday weekend. My love's aunt, uncle, and cousin came in from Iowa, so we were around the family a lot eating delicious food, playing games, and otherwise have a good time.
Now we're getting ready for another busy week of appointments and life. Hopefully we'll be able to continue in a somewhat scheduled and regular routine.
Anyway, this last week or so has been quite busy, but in a way where things seem to be fairly regularly scheduled and expected. Yes, some days are better for my love than others, both physically and emotionally, but overall we seem to be doing alright.
My love, my love's parents, and I all had the opportunity to attend a brain tumor support/networking group at Gilda's Club last Monday. It was really neat and helpful, I think, as well as a bit difficult. It was certainly inspiring to hear stories of people that had brain tumors and are now cancer free and doing well, but scary to hear of those who have had recurrences after doing well. It was nice, though, to talk with people who really understand what you are going through because they have gone through it or are going through it now. It was really neat too to have "cancer warriors" (I saw that term on a shirt and really liked it) as well as those supporting the cancer warriors all in a group together. Overall, I really appreciated the group and I'm sad it only meets once a month.
Last week my love was also evaluated for occupational, physical, and speech/cognitive therapies with the outpatient program my love is going through. Many of the evaluation activities were quite tough, I don't think I would have done much better, if any better, than my love did, especially on the speech/cognitive stuff. We still haven't heard back from the outpatient program for the schedule, but they suggested 8-12 weeks, 2 times per week for each of the therapies. They suggested doing all three therapies back to back twice a week, but my love would rather not have OT and PT on the same day because of a lack of energy right now, which I think is very smart. You don't want to be so tried for one of the hours of therapy that you get nothing out of it or push yourself to hard.
We did lots of stuff with my love's family (immediate and extended) over the holiday weekend. My love's aunt, uncle, and cousin came in from Iowa, so we were around the family a lot eating delicious food, playing games, and otherwise have a good time.
Now we're getting ready for another busy week of appointments and life. Hopefully we'll be able to continue in a somewhat scheduled and regular routine.
Friday, May 18, 2012
A Great Day All Around
Well, as many of you know, yesterday was my birthday. I was a little apprehensive about how things would be this year since I'm in Michigan, away from most of my friends and family and we're all dealing with the stress of a lot of unknowns. It really turned out to be fantastic, though, thanks to lots of love and kindness from my family and my love's family.
On Sunday, my love's extended family got together and celebrated Mother's Day as well as my love's grandfather's birthday and they included my birthday in with the celebration. The day before, my love and I made my favorite birthday dessert (strawberry pie), and we enjoyed that along with cake after a delicious lunch of ribs. They even gave me birthday cards and gifts. I felt so included, which really meant the world to me.
Then yesterday, on my actual birthday, I got a call first thing in the morning from my sweet momma. Then my love and I got to go to Naked Plates (an unfinished pottery painting place) and painted a picture frame together. I'm excited to see how it turns out. While there, my grandfather called me and wished me a happy birthday. Then I came home to cards from my grandmother and the choir I was a part of in Milwaukee. I got to talk with my grandmother as well. Then, after my love's radiation, my love's mom made us a delicious pasta alfredo dinner (which is one of my very favorite things). After dinner I went to my support meeting at Gilda's Club. This week's meeting was much better for me personally. Not only did I not have to deal with people telling me that I should be grateful for what I have and focus on the positive rather than feeling sad and scared and angry (which are perfectly valid emotions), but we also had a nice discussion and I felt like I could relate with a lot of the people in the group and that they could relate to me. After the meeting, I came home to freshly baked and iced, filled cupcakes that my love and my love's mom made for me. My love and my love's parents gave me really great and meaningful gifts and sang happy birthday to me. I also got to talk with my brother and sister in the evening, which was really wonderful as well. And several great people from Milwaukee texted me throughout the day to wish me a happy birthday as well. Not to mention all the well wishes from friends on Facebook. I felt so spoiled and special and included and well remembered all day.
I know it's probably kind of a silly and trivial thing, especially with everything else we all have going on right now with my love's illness, but it really meant the world to me to have a great birthday.
So thanks to each and every one of you that helped make my day great, and to those who are sending good thoughts and vibes my way all the time, I really appreciate it.
On Sunday, my love's extended family got together and celebrated Mother's Day as well as my love's grandfather's birthday and they included my birthday in with the celebration. The day before, my love and I made my favorite birthday dessert (strawberry pie), and we enjoyed that along with cake after a delicious lunch of ribs. They even gave me birthday cards and gifts. I felt so included, which really meant the world to me.
Then yesterday, on my actual birthday, I got a call first thing in the morning from my sweet momma. Then my love and I got to go to Naked Plates (an unfinished pottery painting place) and painted a picture frame together. I'm excited to see how it turns out. While there, my grandfather called me and wished me a happy birthday. Then I came home to cards from my grandmother and the choir I was a part of in Milwaukee. I got to talk with my grandmother as well. Then, after my love's radiation, my love's mom made us a delicious pasta alfredo dinner (which is one of my very favorite things). After dinner I went to my support meeting at Gilda's Club. This week's meeting was much better for me personally. Not only did I not have to deal with people telling me that I should be grateful for what I have and focus on the positive rather than feeling sad and scared and angry (which are perfectly valid emotions), but we also had a nice discussion and I felt like I could relate with a lot of the people in the group and that they could relate to me. After the meeting, I came home to freshly baked and iced, filled cupcakes that my love and my love's mom made for me. My love and my love's parents gave me really great and meaningful gifts and sang happy birthday to me. I also got to talk with my brother and sister in the evening, which was really wonderful as well. And several great people from Milwaukee texted me throughout the day to wish me a happy birthday as well. Not to mention all the well wishes from friends on Facebook. I felt so spoiled and special and included and well remembered all day.
I know it's probably kind of a silly and trivial thing, especially with everything else we all have going on right now with my love's illness, but it really meant the world to me to have a great birthday.
So thanks to each and every one of you that helped make my day great, and to those who are sending good thoughts and vibes my way all the time, I really appreciate it.
Wednesday, May 16, 2012
A New Countdown
My love started both radiation therapy and chemotherapy yesterday to attempt to get rid of any residual tumor cells. My love will undergo 30 treatments of radiation, scheduled at this time to end on June 26. During that time, my love will take a chemo pill each day for a total of around 42 days (it may be a little longer because of the Memorial Day holiday during which the Cancer Center is closed).
My love and I were both a bit nervous about potential side effects to the therapies, especially the chemo pill. I am happy to report that my love has had relatively few side effects thus far. So far the side effects from radiation have been headaches (possibly from the mask my love has to wear which is quite tight) and a metallic taste in my love's mouth after each treatment session. The chemo pill has caused my love's throat to be quite dry. We're very thankful that my love has not had issues with nausea as of yet, and hope and pray that the lack of nausea will continue. The majority of side effects from radiation usually occur 2-3 weeks after the start of treatment as the radiation builds up in the body, and I am unsure when the side effects from the chemo are usually seen, but I would guess that as it builds up in the body as well, there could be more side effects, but that is just me guessing. I certainly hope that the process will go smoothly with minimal side effects.
So yeah, my love has had 2 radiation treatments thus far, so 28 more to go! The countdown is on again!
My love and I were both a bit nervous about potential side effects to the therapies, especially the chemo pill. I am happy to report that my love has had relatively few side effects thus far. So far the side effects from radiation have been headaches (possibly from the mask my love has to wear which is quite tight) and a metallic taste in my love's mouth after each treatment session. The chemo pill has caused my love's throat to be quite dry. We're very thankful that my love has not had issues with nausea as of yet, and hope and pray that the lack of nausea will continue. The majority of side effects from radiation usually occur 2-3 weeks after the start of treatment as the radiation builds up in the body, and I am unsure when the side effects from the chemo are usually seen, but I would guess that as it builds up in the body as well, there could be more side effects, but that is just me guessing. I certainly hope that the process will go smoothly with minimal side effects.
So yeah, my love has had 2 radiation treatments thus far, so 28 more to go! The countdown is on again!
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