It is with a heavy heart that I come to let everyone know that mom has been registered for hospice and will be moved to an in-patient hospice care. The doctor told me today that the tumor has grown very fast and spread and there is no treatment that would bring her back from this and right now we are going to go with keeping her pain free and comfortable.
She fought this horrible beast with every ounce of her being and we are so proud of her for beating the odds and living this long with this cancer. I will update again when I can, please keep our family in your prayers and know that I appreciate all of the support that I have received from friends and family that post comments on my blog.
Thursday, May 07, 2009
Mom update
I just wanted to update those of you that read my blog and let you all know that mom is back in the hospital. We are hoping to get MRI results today and find out what is going on, she has gotten progressively worse since I brought her home last week. Please keep us in your prayers.
Saturday, May 02, 2009
Shower Day
Happy baby shower day to my little sister!! Both mom and I wish we could be there but I'm there in spirit and I feel that I contributed a lot to it...I made the invitations and the favors and since she's at her shower now and there is no risk of her seeing this before the party I can finally post pictures of my creations! My idea was to take a photo of each guest with Nancy as they came in and print the photos and put them in the clear acrylic frames which I wrote on with paint marker as a souvenir of the day. I made enough even for those that couldn't attend (lots of out of town guests on the list of invites) and we will add a photo of Nancy with all her gifts for those people. I think it's a good idea for those people to use the frames as a thank you for their gift even if they couldn't be there today. :)
The candies are blue M&M's and blue hershey's kisses with "It's a Boy" on the tags. I had the ribbons printed and Alex picked out the little bassinet to put at the end of the date since he was with me the day I ordered them. I think they turned out really cute. :)
We did a lot of planning and rearranging but managed to get most of the living room furniture in that mom had at her house, when she walked in on tuesday after I brought her home she said "It looks so pretty here." I think she was happy to see her furniture and her things here, it made her feel at home. Still have a lot of work to do...tons of pictures to hang up on the walls but it will get done eventually.
Mom's room was changed around as well because I put the large dresser that she had in her guest bedroom in her room and I added a small chair from her office as well as her prized heart shaped table with glass top where she kept some very precious pieces she has collected over the years.
The candies are blue M&M's and blue hershey's kisses with "It's a Boy" on the tags. I had the ribbons printed and Alex picked out the little bassinet to put at the end of the date since he was with me the day I ordered them. I think they turned out really cute. :)
We did a lot of planning and rearranging but managed to get most of the living room furniture in that mom had at her house, when she walked in on tuesday after I brought her home she said "It looks so pretty here." I think she was happy to see her furniture and her things here, it made her feel at home. Still have a lot of work to do...tons of pictures to hang up on the walls but it will get done eventually.
Mom's room was changed around as well because I put the large dresser that she had in her guest bedroom in her room and I added a small chair from her office as well as her prized heart shaped table with glass top where she kept some very precious pieces she has collected over the years.
Friday, May 01, 2009
Another mom update
It's been a few days and lots of discussions and phone calls later it has been decided that mom is not a candidate for surgery at this time because there is too much swelling and both doctors agree that she should receive some IV infusion chemotherapy and hopefully she will respond to that and the swelling and the tumor will shrink.
Mom is back up to 12mg of steroids and overall I think she had a better day today...the last 2 days were a bit on the rocky side....nevertheless I came home from work yesterday and promptly put her in the shower and washed her all up and put her in clean clothes...being in the same nightgown for 2 days isn't a great boost to your moral, in my opinion. She felt good afterwards and took a nice relaxing nap before dinner.
I find it interesting that the neurosurgeon would be the voice of reason that would help me to stop questioning my decision for mom's care. I never really thought he had good bedside manner and to put it bluntly he had the personality of a piece of cardboard when I dealt with him last fall...he didn't really talk to us too much but I felt that his surgical skills were more important and those were impeccable so who cares if he didn't really talk to me! Well last night when he called me after hours I felt such a sense of calm after talking to him and I thanked him for his kindness and his patience and support in explaining everything to me...it was like he was a different doctor this time around...who knows...maybe he sensed my apprehension and my worry. Whatever the reason, I'm glad that he called me and that both doctors agree on the next course of action. The IV infusion that mom will be getting is Avastin, a drug that is not FDA approved for brain tumors but is marketed for colorectal cancer, lung cancer and breast cancer. Clinical trials of avastin have had good results in the drug shrinking brain tumors so the company is seeking FDA approval for the drug to be used for brain cancer patients as well.
Next thursday is mom's first infusion...please keep her in your prayers that this treatment will shrink the tumor. We are only about 6-7 weeks away from a new little boy being born into our family and I pray that God will allow mom to hold her new grandson in her arms.
In other news, the house is still pretty crazy...stuff everywhere, boxes piled to the ceiling...but I will get through it little by little. I'm still trying to figure out how I'm going to put my scrapbooking stuff in 1/2 the space I had before...was I crazy to give up my larger room to my son? I'm figuring out a different storage system...it's taking me some time to work through it all in my head but I'll get it done in time.
Mom is back up to 12mg of steroids and overall I think she had a better day today...the last 2 days were a bit on the rocky side....nevertheless I came home from work yesterday and promptly put her in the shower and washed her all up and put her in clean clothes...being in the same nightgown for 2 days isn't a great boost to your moral, in my opinion. She felt good afterwards and took a nice relaxing nap before dinner.
I find it interesting that the neurosurgeon would be the voice of reason that would help me to stop questioning my decision for mom's care. I never really thought he had good bedside manner and to put it bluntly he had the personality of a piece of cardboard when I dealt with him last fall...he didn't really talk to us too much but I felt that his surgical skills were more important and those were impeccable so who cares if he didn't really talk to me! Well last night when he called me after hours I felt such a sense of calm after talking to him and I thanked him for his kindness and his patience and support in explaining everything to me...it was like he was a different doctor this time around...who knows...maybe he sensed my apprehension and my worry. Whatever the reason, I'm glad that he called me and that both doctors agree on the next course of action. The IV infusion that mom will be getting is Avastin, a drug that is not FDA approved for brain tumors but is marketed for colorectal cancer, lung cancer and breast cancer. Clinical trials of avastin have had good results in the drug shrinking brain tumors so the company is seeking FDA approval for the drug to be used for brain cancer patients as well.
Next thursday is mom's first infusion...please keep her in your prayers that this treatment will shrink the tumor. We are only about 6-7 weeks away from a new little boy being born into our family and I pray that God will allow mom to hold her new grandson in her arms.
In other news, the house is still pretty crazy...stuff everywhere, boxes piled to the ceiling...but I will get through it little by little. I'm still trying to figure out how I'm going to put my scrapbooking stuff in 1/2 the space I had before...was I crazy to give up my larger room to my son? I'm figuring out a different storage system...it's taking me some time to work through it all in my head but I'll get it done in time.
Tuesday, April 28, 2009
Bringing mom home today
Mom is coming home today after being in the hospital and then rehab since April 6th and I could tell that she was really happy and looking forward to sleeping in her own bed again.
We saw the doctor yesterday and while we haven't gotten a final answer he is calling the neurosurgeon and wants to ask him if he would operate on mom again to remove the regrowth and insert gliadel wafers to release chemo right into the cavity to kill off any remaining microscopic cells that remain. Once we find out if the option is there I hope that mom will be able to help make the decision, I'm not sure if she fully understands what is going on.
More to come....
We saw the doctor yesterday and while we haven't gotten a final answer he is calling the neurosurgeon and wants to ask him if he would operate on mom again to remove the regrowth and insert gliadel wafers to release chemo right into the cavity to kill off any remaining microscopic cells that remain. Once we find out if the option is there I hope that mom will be able to help make the decision, I'm not sure if she fully understands what is going on.
More to come....
Monday, April 27, 2009
15 months
It's been 15 months since mom was diagnosed with glioblastoma, a word I had never heard of before we were told she had it. I am amazed at how many people I have come across who have been touched with brain cancer since we have embarked on this journey in our lives.
As I said in a previous post we learned recently that mom's tumor has grown back since it was removed back in October so today we are going to the oncologist to find out what the next step is and what our options are. I am going to be taking mom home from the nursing/rehab facility tomorrow and hopefully we will have at least the first floor of the house somewhat presentable after the chaos of yesterday. It took over 6 hours to unload the truck and put everything somewhere in my house. A couple of furniture pieces didn't make it in because my house just isn't big enough compared to the house that mom had in Florida.
I will post again once I get back from the doctor.
As I said in a previous post we learned recently that mom's tumor has grown back since it was removed back in October so today we are going to the oncologist to find out what the next step is and what our options are. I am going to be taking mom home from the nursing/rehab facility tomorrow and hopefully we will have at least the first floor of the house somewhat presentable after the chaos of yesterday. It took over 6 hours to unload the truck and put everything somewhere in my house. A couple of furniture pieces didn't make it in because my house just isn't big enough compared to the house that mom had in Florida.
I will post again once I get back from the doctor.
Thursday, April 23, 2009
Glad to be home!
It's been a rough few days for me, not the greatest trip to Florida I've ever had that's for sure...thank God I had Robert with me for all the help and to chauffeur me around because I couldn't do much in the way of driving due to the fact that monday morning my blood pressure decided to go through the roof!
Here's the reader's digest version....well for the most part! I posted some of this on my private message board so it's easier to copy and paste.
It sure is good to be home and know that if I have any more health scares I am here and not away...I am grateful to Dr. P (mom's primary care physician, next door neighbor for a few years and friend ) for taking care of me and not charging me a dime even though I plan to send them my insurance information so that they can bill for it and get something. I had mom's BP cuff and decided to check my pressure for the hell of it (it's been fine and I check it at home about once a week) and it was in the 160/95 range so I had Robert check his because I thought maybe the cuff wasn't working right but his came up good so that got me worried. I got about 3 hours of sleep sunday night and the packers were there at 8am on monday morning and I checked my pressure every hour or so and tried to stay calm but by 1pm I was really worried because it was like 200/110 so I called Dr. P's office and they told me to come right in. I got dizzy there so originally she was just going to give me samples of BP meds and send me on my way but she had to check me in and document it when I got dizzy. She gave me meds and had me sit in the office for an hour to monitor me and it was coming down so she called in atenolol to Walmart (thank God for the $4 prescriptions since I didn't have my RX card on me) and told me to come back tuesday for a recheck. I did that and it was still pretty high so she told me to double up on the meds...so I'm taking 100mg daily and not happy about it...in the past I only took 25mg...I am hoping once the stress of the move passes I will relax....I realized I need to take better care of myself or I won't be any good to anyone else! Right now my BP is on my wrist monitor is 131/86 but the arm cuff is reading 149/90...I am wondering if I'm have hypertension for a while now from all the stress of taking care of mom and the wrist cuff wasn't giving me true readings? Either way I am following up with my own doctor tomorrow at 4:15.
It was really hard to say goodbye to that house yesterday and walk away but it had to be done. And now I have a huge ass truck (that thing holds 4 houses worth of stuff on it!!) coming to my house on sunday to unload all of the furniture and over 60 boxes...don't ask me where it's all going...that's Jim's department...I've done my end of it and now I need to relax.
I took a few pictures despite the fact that it was sad but I wanted to remember this time in my life because I learned a valuable lesson...all of these things that are in boxes right now...well it's just stuff and I don't want to have that happen to me when it's time to move from here. After a while you just don't need another vase or another picture frame and I have come to realize that we all need to downsize and stop being so attached to things that are just material. Having said that I'm happy that mom will have her pretty things here in my home that is now hers, as well.
I thought this was symbolic for me last night as I sat on the plane watching the sunset and I felt like it was that part of my life is setting, as well...all of the trips
that Alex and I made to visit mom and my stepdad and then after he passed just my mom were some of the best times for us and I'm glad that we did it every year and that in 2007 God knew the future for us and we went down there 4 times that year...the 4th trip being Christmas 2007, just one month before we got mom's diagnosis. If you look at the picture of the truck on the street...where you see the red bush on the left side is the exact spot where this happened and that week we spent there was a blessing. When I made the decision to jump on a plane and surprise mom by showing up at her door unannounced I know in my heart that it was GOD putting that thought in my head and nudging me to go spend more time with mom and to have Alex experience those memories with his grandma. Yes, I'll miss that house and all of those wonderful times we had but I'm grateful that I have the 2 scrapbooks I made for mom documenting every single one of those trips going back to 2003. It makes you realize why scrapbooking and keeping those memories on paper is so important...the memories will someday fade but all you need to do is open a scrapbook and it all comes flooding back to you.
Goodbye Olde Bailey Lane...I will never forget the fun times we all had there, that's for sure!!
Here's the reader's digest version....well for the most part! I posted some of this on my private message board so it's easier to copy and paste.
It sure is good to be home and know that if I have any more health scares I am here and not away...I am grateful to Dr. P (mom's primary care physician, next door neighbor for a few years and friend ) for taking care of me and not charging me a dime even though I plan to send them my insurance information so that they can bill for it and get something. I had mom's BP cuff and decided to check my pressure for the hell of it (it's been fine and I check it at home about once a week) and it was in the 160/95 range so I had Robert check his because I thought maybe the cuff wasn't working right but his came up good so that got me worried. I got about 3 hours of sleep sunday night and the packers were there at 8am on monday morning and I checked my pressure every hour or so and tried to stay calm but by 1pm I was really worried because it was like 200/110 so I called Dr. P's office and they told me to come right in. I got dizzy there so originally she was just going to give me samples of BP meds and send me on my way but she had to check me in and document it when I got dizzy. She gave me meds and had me sit in the office for an hour to monitor me and it was coming down so she called in atenolol to Walmart (thank God for the $4 prescriptions since I didn't have my RX card on me) and told me to come back tuesday for a recheck. I did that and it was still pretty high so she told me to double up on the meds...so I'm taking 100mg daily and not happy about it...in the past I only took 25mg...I am hoping once the stress of the move passes I will relax....I realized I need to take better care of myself or I won't be any good to anyone else! Right now my BP is on my wrist monitor is 131/86 but the arm cuff is reading 149/90...I am wondering if I'm have hypertension for a while now from all the stress of taking care of mom and the wrist cuff wasn't giving me true readings? Either way I am following up with my own doctor tomorrow at 4:15.
It was really hard to say goodbye to that house yesterday and walk away but it had to be done. And now I have a huge ass truck (that thing holds 4 houses worth of stuff on it!!) coming to my house on sunday to unload all of the furniture and over 60 boxes...don't ask me where it's all going...that's Jim's department...I've done my end of it and now I need to relax.
I took a few pictures despite the fact that it was sad but I wanted to remember this time in my life because I learned a valuable lesson...all of these things that are in boxes right now...well it's just stuff and I don't want to have that happen to me when it's time to move from here. After a while you just don't need another vase or another picture frame and I have come to realize that we all need to downsize and stop being so attached to things that are just material. Having said that I'm happy that mom will have her pretty things here in my home that is now hers, as well.I thought this was symbolic for me last night as I sat on the plane watching the sunset and I felt like it was that part of my life is setting, as well...all of the trips
that Alex and I made to visit mom and my stepdad and then after he passed just my mom were some of the best times for us and I'm glad that we did it every year and that in 2007 God knew the future for us and we went down there 4 times that year...the 4th trip being Christmas 2007, just one month before we got mom's diagnosis. If you look at the picture of the truck on the street...where you see the red bush on the left side is the exact spot where this happened and that week we spent there was a blessing. When I made the decision to jump on a plane and surprise mom by showing up at her door unannounced I know in my heart that it was GOD putting that thought in my head and nudging me to go spend more time with mom and to have Alex experience those memories with his grandma. Yes, I'll miss that house and all of those wonderful times we had but I'm grateful that I have the 2 scrapbooks I made for mom documenting every single one of those trips going back to 2003. It makes you realize why scrapbooking and keeping those memories on paper is so important...the memories will someday fade but all you need to do is open a scrapbook and it all comes flooding back to you.Goodbye Olde Bailey Lane...I will never forget the fun times we all had there, that's for sure!!
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