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.
Tuesday, May 29, 2012
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!
Tuesday, May 15, 2012
Diligent, Dedicated, and Determined
I know I've said it before, but I have to say it again: my love inspires me!
Even though my love was frustrated and somewhat intimidated by all of the physical, occupational, and (especially) speech/language/cognitive therapy activities my love had to do in the hospital, and felt that the therapists did not get an accurate picture of my love's current capabilities, my love is still showing incredible diligence, dedication, and determination by faithfully doing the homework exercises given by the therapists.
Yesterday, my love did specific exercises to help with balance as well as quite a bit of walking for physical therapy. On top of that my love completed a speech/language/cognitive therapy activity that was very visually challenging with only one mistake (which is awesome because I probably would have missed more than that). My love also played bananagrams which is a great cognitive challenge for anyone, as well as an occupational challenge to pick up all of the little tiles. And my love not only played the game, but almost won (while I lost miserably :-P).
Today, my love has already done the standing balance exercises the physical therapist gave, as well as played a bit with the occupational therapy "thera-putty" and it's not even 11 am yet.
I am so proud of my love as I know the exercises are tiring and can be frustrating. My love is totally rocking it though and I know that my love will only continue to get better with such diligence and such a great attitude.
Even though my love was frustrated and somewhat intimidated by all of the physical, occupational, and (especially) speech/language/cognitive therapy activities my love had to do in the hospital, and felt that the therapists did not get an accurate picture of my love's current capabilities, my love is still showing incredible diligence, dedication, and determination by faithfully doing the homework exercises given by the therapists.
Yesterday, my love did specific exercises to help with balance as well as quite a bit of walking for physical therapy. On top of that my love completed a speech/language/cognitive therapy activity that was very visually challenging with only one mistake (which is awesome because I probably would have missed more than that). My love also played bananagrams which is a great cognitive challenge for anyone, as well as an occupational challenge to pick up all of the little tiles. And my love not only played the game, but almost won (while I lost miserably :-P).
Today, my love has already done the standing balance exercises the physical therapist gave, as well as played a bit with the occupational therapy "thera-putty" and it's not even 11 am yet.
I am so proud of my love as I know the exercises are tiring and can be frustrating. My love is totally rocking it though and I know that my love will only continue to get better with such diligence and such a great attitude.
Saturday, May 12, 2012
How Rude!
This is my second post in a row where I am ticked off with people... maybe I need more sleep, or maybe people are just rude... maybe both!
So my love and I just went to the grocery store to pick up a few items for a pie we're going to make and tonight's dinner. My love thought it would be nice to get out of the house and do some walking, which I think is totally awesome seeing as my love just had brain surgery less than a week ago. Way to get in some physical therapy my love!
Anyway, my love is currently using a walker to help get around as my love's balance is a little off right now. My love has previously expressed discomfort with going out in public using a walker, so I was doubly proud of my love for getting out and going to the store.
My love is amazing and always strikes a wonderful balance between being who my love is while still striving not to make people too uncomfortable. I don't know if it was because my love didn't want to make others uncomfortable or if my love's head was just cold, but my love wore a hat to the store.
So with hat and walker we made our way to the produce section and this kid who was probably around 8 years old gave my love this rude, kind of mean stare. Now this frustrated me quite a bit, but I tried to ignore it, especially since he was fairly young and maybe didn't know the appropriate response to something he wasn't used to seeing. Yes, probably a stretch and giving him too much benefit of the doubt, but yeah, I tried to get what we needed and move away quickly. But then, I saw that this kid's mother was staring at my love rather rudely as well! UGH!! And, to me at least, these stares didn't seem just rude (which is bad enough), but they seemed almost condescending. I seriously felt like punching them. I had hoped my love might have missed the stares, but of course that didn't happen because when we got to the car my love said that the degree of staring was unexpected. Knowing the jerks had made my love uncomfortable made me want to find them and punch them even more.
It just really makes me angry when people stare at those that are different, and maybe it upsets me so much because I know I've done it and I always feel terrible for doing so. I'd like to think that I do my best not to be condescending even if something does catch me by surprise, though. I don't know, I guess it just really frustrates me. Those people had no idea what my love has been and continues to go through, they just saw a young person with a walker. It is none of their business either. People are people, can't we start treating one another as such?!?
So yeah, next time you see someone or something a little out of the ordinary, please try not to stare. I personally think a smile doesn't hurt either. Maybe some people would disagree, and maybe I will change my mind in time, but I think encouragement in the form of a smile is a whole heck of a lot better than rude stares. I know that when we were in the hospital, it seemed to mean something in my love when people would give a smile as my love walked in the halls with the walker or said something encouraging. Yes, hospitals are a different setting, but I think we should treat people well and encourage each other no matter what!
So my love and I just went to the grocery store to pick up a few items for a pie we're going to make and tonight's dinner. My love thought it would be nice to get out of the house and do some walking, which I think is totally awesome seeing as my love just had brain surgery less than a week ago. Way to get in some physical therapy my love!
Anyway, my love is currently using a walker to help get around as my love's balance is a little off right now. My love has previously expressed discomfort with going out in public using a walker, so I was doubly proud of my love for getting out and going to the store.
My love is amazing and always strikes a wonderful balance between being who my love is while still striving not to make people too uncomfortable. I don't know if it was because my love didn't want to make others uncomfortable or if my love's head was just cold, but my love wore a hat to the store.
So with hat and walker we made our way to the produce section and this kid who was probably around 8 years old gave my love this rude, kind of mean stare. Now this frustrated me quite a bit, but I tried to ignore it, especially since he was fairly young and maybe didn't know the appropriate response to something he wasn't used to seeing. Yes, probably a stretch and giving him too much benefit of the doubt, but yeah, I tried to get what we needed and move away quickly. But then, I saw that this kid's mother was staring at my love rather rudely as well! UGH!! And, to me at least, these stares didn't seem just rude (which is bad enough), but they seemed almost condescending. I seriously felt like punching them. I had hoped my love might have missed the stares, but of course that didn't happen because when we got to the car my love said that the degree of staring was unexpected. Knowing the jerks had made my love uncomfortable made me want to find them and punch them even more.
It just really makes me angry when people stare at those that are different, and maybe it upsets me so much because I know I've done it and I always feel terrible for doing so. I'd like to think that I do my best not to be condescending even if something does catch me by surprise, though. I don't know, I guess it just really frustrates me. Those people had no idea what my love has been and continues to go through, they just saw a young person with a walker. It is none of their business either. People are people, can't we start treating one another as such?!?
So yeah, next time you see someone or something a little out of the ordinary, please try not to stare. I personally think a smile doesn't hurt either. Maybe some people would disagree, and maybe I will change my mind in time, but I think encouragement in the form of a smile is a whole heck of a lot better than rude stares. I know that when we were in the hospital, it seemed to mean something in my love when people would give a smile as my love walked in the halls with the walker or said something encouraging. Yes, hospitals are a different setting, but I think we should treat people well and encourage each other no matter what!
Wednesday, May 9, 2012
Some Days Are Better Than Others
I like to think of myself as a fairly nice person most of the time...
Other times, maybe not so much! Like today, I seriously wanted to trip and/or yell at the physical, occupational, and speech/language therapists.... Probably not so nice.... But I'm sorry, when you test my love and it makes my love cry, it's frustrating to me.... Yes, the tears were because my love was unable to do things that were once easy, but seriously, you make my love cry, I want to make you cry....
So yeah, all three therapists suggested that my love go to an intensive inpatient rehab to work on more therapy stuff. I'm not so sure how I feel about that.... I know my love just wants to go home. We all want what's best for my love, we just have differing opinions of what that looks like I suppose. I'm just worried about it because my love is starting chemo and radiation Monday, and would be at this therapy rehab place for one to two weeks, and we have no idea how my love will react to to the treatment. Ugh! I just wish I could wave my magic wand and make everything better.
Other times, maybe not so much! Like today, I seriously wanted to trip and/or yell at the physical, occupational, and speech/language therapists.... Probably not so nice.... But I'm sorry, when you test my love and it makes my love cry, it's frustrating to me.... Yes, the tears were because my love was unable to do things that were once easy, but seriously, you make my love cry, I want to make you cry....
So yeah, all three therapists suggested that my love go to an intensive inpatient rehab to work on more therapy stuff. I'm not so sure how I feel about that.... I know my love just wants to go home. We all want what's best for my love, we just have differing opinions of what that looks like I suppose. I'm just worried about it because my love is starting chemo and radiation Monday, and would be at this therapy rehab place for one to two weeks, and we have no idea how my love will react to to the treatment. Ugh! I just wish I could wave my magic wand and make everything better.
Tuesday, May 8, 2012
Tumor-Free Tuesday
Before going in for surgery, my love felt it was very important to keep positive energy around. With this in mind, my love looked forward to the day after surgery, saying it would be "Tumor-Free Tuesday."
I hate to say it, but I had my doubts. I didn't know if the surgeon would really be able to remove the entire mass as the last surgeon mentioned some obstacles. Thankfully, the surgeon is much more skilled and knowledgeable than I am and was able to remove the entire mass as well as some surrounding tissue in each direction around where the tumor had been without causing damage to my love's motor functioning. (For those of you who don't know, the tumor was situated very close to the motor strip on the right side of the brain, which affects the left side of the body's motor functioning.)
It is important to understand that the type of cancer my love has is one that has a tendency to project out from tumors into surrounding tissues (kind of like fingers), so there may be some tumor/cancer cells left. The doctor said we probably removed about 99.9% of the cells between the two surgeries, but we still have to be aware of the other .1% that may be lingering. This is why my love will still have to undergo radiation therapy and chemotherapy treatment and have frequent MRI's to see if anything tries to grow back. Basically, the goal is to kick the bad cells in the pants so hard that they go away and don't come back.
Anyway, today will forever be Tumor-Free Tuesday in my book. We are all so thankful to be going into treatment without a large mass that needs to be shrunk in order to go away.
Just to further update everyone and brag some more about my love, the surgeon said yesterday that my love was very helpful during the surgery. I think I mentioned in a previous post that my love had to be awake for part of the surgery. Well, of the 3 1/2 to 4 hours that the surgery took, the surgeon said my love needed to be awake for about an hour of it. During the time my love was awake, my love was asked to do things like smile and wiggle fingers on the left hand so that the surgeon knew he wasn't impairing my love's functioning. The surgeon said that many people stop responding and helping about half way through, but my love was a total trooper and was helpful the entire time my love's help was needed. I am so proud of my love and admire my love's strength and courage so much. My love inspires me!
So yeah, Happy Tumor-Free Tuesday to everyone!
I hate to say it, but I had my doubts. I didn't know if the surgeon would really be able to remove the entire mass as the last surgeon mentioned some obstacles. Thankfully, the surgeon is much more skilled and knowledgeable than I am and was able to remove the entire mass as well as some surrounding tissue in each direction around where the tumor had been without causing damage to my love's motor functioning. (For those of you who don't know, the tumor was situated very close to the motor strip on the right side of the brain, which affects the left side of the body's motor functioning.)
It is important to understand that the type of cancer my love has is one that has a tendency to project out from tumors into surrounding tissues (kind of like fingers), so there may be some tumor/cancer cells left. The doctor said we probably removed about 99.9% of the cells between the two surgeries, but we still have to be aware of the other .1% that may be lingering. This is why my love will still have to undergo radiation therapy and chemotherapy treatment and have frequent MRI's to see if anything tries to grow back. Basically, the goal is to kick the bad cells in the pants so hard that they go away and don't come back.
Anyway, today will forever be Tumor-Free Tuesday in my book. We are all so thankful to be going into treatment without a large mass that needs to be shrunk in order to go away.
Just to further update everyone and brag some more about my love, the surgeon said yesterday that my love was very helpful during the surgery. I think I mentioned in a previous post that my love had to be awake for part of the surgery. Well, of the 3 1/2 to 4 hours that the surgery took, the surgeon said my love needed to be awake for about an hour of it. During the time my love was awake, my love was asked to do things like smile and wiggle fingers on the left hand so that the surgeon knew he wasn't impairing my love's functioning. The surgeon said that many people stop responding and helping about half way through, but my love was a total trooper and was helpful the entire time my love's help was needed. I am so proud of my love and admire my love's strength and courage so much. My love inspires me!
So yeah, Happy Tumor-Free Tuesday to everyone!
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