Of all things....I have a chest cold!!! I can't believe that something so normal like a cold has entered our house. In a huge way I am relieved....however....of course....I'm panicking about Richard getting it but we're being sosososo careful and today I'm feeling much better. Phew...could it go away without another catastrophe??????? I'm praying that it does.
I've been keeping some of the strangest sleeping hours....and so has Richard. For the first time in his life he is having difficulty sleeping!!!! He is so use to routine that nights of tossing and turning have really upset him. I'm sure that it's a combination of the medication he is on (steroids!!!) and everything he has been through. But....the darkness, the quiet, the space that night brings...it seems to give him room to think, to worry, to ponder...and I believe it's very frightening for him...like driving a stagecoach with a team of wild horses pulling it...wanting to take off and run forever..... When I get up with him, during these sleepless bouts, that is the feeling I get....he looks at me and I hear his mind saying, "Honey....do something.....I can't stop my runaway thoughts.....I'm scared....I don't know if I can hang on.....". All I can do is sit there and listen...and I'm listening hard, making mental notes of things he wants to happen in the future, assuring him when it's needed, opening my heart to his fears and his worries. As difficult as it is to sit there with him and not try to solve all his problems......As hard as it is to watch him mentally suffer.....I am aware that this is one of the gifts of being his partner through this journey. I am aware...that sharing these moments with him are truly priceless.
It is a fact now, however....I HATE BRAIN CANCER!!!!! Watching him deal with the chemo side affects, watching him face this abyss of deep thought, watching him change a little bit each day.....I HATE IT!!!! I realize that he is a very sick man. I know that now it is about making him as comfortable as possible and it's about surrounding him with love, compassion and tenderness. It's about giving him space when he needs it...and moving close when it is necessary. I'm on alert...but yet I'm learning to trust my inner spirit in terms of knowing exactly what to do and when.
We talked to the oncologist's nurse on Friday and she ordered some medication to help with sleeping, however, when we went to pick up the prescription...Walgreens had forgotten to ask how many pills they wanted in the script. By the time they noticed that....the doctor's office was closed for the weekend.....they called the emergency number....but no call back yet..... Another medical glich...that in the end doesn't give my husband any relief. I walked out of there totally disgusted............ Now I hate WALGREENS too.... It is time to change pharmacies. Well this paragraph wasn't very spiritual, was it????? Sorry!!!!
Well....I must get moving.....the day is beautiful, Richard seems steady right now....and I have to brush my teeth.....yes....self-care is important!!! I love you all....if you only knew how much. Thank you for your prayers and support. You give me so much energy and hope.
Love Sherri
Saturday, June 28, 2008
Wednesday, June 25, 2008
Home again
Always feels really good to be home again, even after just one night at Providence in Everett. It WAS a very long one day and night, as we were told to be there by 6:00 AM for placement of a Port-a-cath into my chest for administration of the next step in this process, a new and powerful blend of two chemotherapeutic agents which are designed to cut off the tumors blood supply, causing it to shrivel and die away (Avastin and CPT-11). I will be going to the the Providence Cancer Center in Everett, WA every 14 days for this treatment.
The short version of the story is that The port was not placed until nearly 4:00 PM.. this was after us expecting it to happen early, and me fasting from the midnight before. With Sherri there loving me throughout, my sister and Father there too, we all made it through the day intact. My Dr. came in and said I should just stay there for the night since the Port was in, and My fist Chemo was scheduled for the next day.
Today, after sleeping poorly last night, I AM feeling some Chemo effect with some loss of appetite and generally fatigued. Looking forward to curling into bed again and sleeping sound tonight.
My Love to all. More soon.
Richard
The short version of the story is that The port was not placed until nearly 4:00 PM.. this was after us expecting it to happen early, and me fasting from the midnight before. With Sherri there loving me throughout, my sister and Father there too, we all made it through the day intact. My Dr. came in and said I should just stay there for the night since the Port was in, and My fist Chemo was scheduled for the next day.
Today, after sleeping poorly last night, I AM feeling some Chemo effect with some loss of appetite and generally fatigued. Looking forward to curling into bed again and sleeping sound tonight.
My Love to all. More soon.
Richard
Sunday, June 22, 2008
Please send Richard good thoughts!!!!
I feel badly that I haven't kept everyone up to date during this past week.....but things have been very difficult....and time has been in short supply. I will tell you our story now....and apologize right away for how choppy it all may come out.
After our wonderful Father's Day I noticed that Richard started looking more tired and seemed very lethargic. On Monday I watched him very closely...it's funny....at first I always think I'm the one that is going crazy or that my artistic, dramatic spirit is taking over and making really big things out of nothing...but he definately seemed "far away". He went to bed very early that evening and as I tucked him in he told me that he just didn't feel right. (Oh Great....he was noticing it too!!!) In the morning, when he still seemed to be having a difficult time waking up and began slurring his speech a little...I called the surgeon's office and spoke to one of his assistants. We had an appointment in Seattle on Wednesday to see the infectious disease doctor and so they told me to bring Richard earlier in the morning and they would check him out.
Emily went with us...and Richard slept all the way down. The walk from the garage to the doctor's office seemed like forever. We saw the surgeon's assistant, she asked her one million questions and Emily and I tried to describe to her what our concerns were. Richard was barely talking...other then to say he just needed to sleep. She said she would talk to the surgeon and that he may want to take an MRI and that she would call us on our cell phones if he wanted to do a scan that day. I left the office feeling sort of stupid....and Emily was angry and frustrated.
Dana met us at the Infectious Disease doctor's appointment and as we were waiting for the doctor Richard again fell asleep and was totally disengaged with our conversations. The kids were scared and I was incredibly anxious. When we finally saw the doctor I told him that I needed an advocate and that I felt like something horrible was going on with Richard. Richard tried to talk to him but it was obvious that he was struggling. Dr. Cairins made some calls and within 15 minutes we were back at the surgeon's office getting some attention.
The minute Dr. Foltz saw him he suggested that Rick stay overnight and that they take an immediate MRI and so some bloodwork to determine what was going on. To make a very long story a little shorter....basically after running all the tests....we were told the next morning that Richard's tumor had gotten much bigger and that surgery, at this point was not an option because of one arm of the tumor that reaches into a critical area for motor movement. After an examination the doctor determined that the tumor had already grown into the vision area of the brain and that Rick's left peripheal vision was totally gone. The symptoms that Richard was experiencing was from the swelling around this mass and the doctor began Richard immediately on steroids that would help with the swelling.
Later that day Dr. Foltz met with Richard, Pam (his wonderful sister) and I and it was decided that the next day (Friday) we would go to our oncologist in Everett and begin Avastin/CPT 11 (a chemo used typically for colon cancers...but that have recently been used with great success for treatment of breast and brain cancer) immediately. We were scheduled to begin that chemo in early July beause of the staph infection.....but the infection looked like it was under control and the doctors were suggesting that we not wait.
We were all devastated. I really can't even begin to describe how we were feeling...mainly numb and in deep shock. None of us expected this sort of vicious attack from this cancer and we were totally shocked. Pam and I moved into our efficient mode and contacted family and shared the grim news. Richard got pumped full of the mighty steroids which almost immediately made him feel better. We sat and waited for the next attack to begin.
Unfortunately when we arrived at our oncologist's office in Everett we were met with the horrible news that our insurance company had not OK'd the Avastin/CPT 11 treatment. Dr. Congdon explained that even he had called our insurance companies medical director but no one was calling them back. Again....another moment of total devastation and let down. I immediately called Richard's work and told them about our dilema and they began attacking from their end while Dr. Condon's office continued their attack. Meanwhile Richard, Pam and I got our "chemotherapy counseling" and "infusion room" tour and Richard got yet more blood work taken care of. Dr. Congdon scheduled Richard for having his port-a-cath (a permanent port put into a large vein near his heart that will make it so Richard doesn't need to be poked every time they need blood or everytime they need to give him anything...the vein is also big enough and strong enough to handle the toxicity of the chemo he'll be getting) put in early Monday morning and then his first round of chemotherapy will happen that afternoon. As we left Dr. Congdon's office....Richard's work called and his boss had spoken to the owner of the medical insurance company and everything was OK'd and the doctor was being notified. Alleluia!!!!
Phew....What a story......and phew what a nightmare for my poor husband. We still can't believe that this is happening. I don't know what we've been thinking but basically I think we've been working so hard to "beat" the statistics of GBM cancer that we NEVER allowed our minds to really go there and stay with the negative thoughts for very long. It seems like now......we are being forced to look at the vicious strength of this disease and raise the fight even higher than we have been. Richard and I are prepared to continue fighting with as much resolve and energy as possible. We are also so committed to making each moment full with attention and being. It is time....time for us to gather our family and friends around us and to remember all the many blessings that touch us throughout our days.
This weekend has been miraculous. Friday night Emily and Jason came over and we sat and hugged and cried and laughed and then hugged and cried and held hands and talked, talked, talked. It was hard but even hard has it's gracious parts and those are to be treasured. I watched my step-daughter grow that night....as she described her feelings, her fears, her love for her Dad. It was beautiful.
Yesterday we had a band of angels show up to do yard work with us. Oh my gosh!!!! In just a few hours our yard was transformed into the most beautiful place for Richard and I to look out on. What a wonderful gift for us!!!! It was amazing to just be surrounded by such love and giving. It felt so awesome. Thank you so much!!!
Wendy.....our beautiful friend....brought us many yummy meals (she has been providing food since this whole thing began) for our freezer. Cooking has been so hard for me (I don't get why.....but even boiling water seems challenging at this point). Wendy has always provided us with yummy treats to eat. She is amazing....and a fantastic cook.
Richard's Dad, Leo, is here now. He will take us to Everett in the morning and will come home with us tomorrow afternoon to help me with Richard. He is a dear man. Richard's Mom, Fran,will continue to do pet sitting while we're gone. Both of these people are in so much pain watching their son struggle. They have supported us so perfectly. The love and tenderness that they have approached this crisis with is beautiful to watch.
Please send Richard thoughts of strength and healing. He is strong....but he is sososo tired. He needs all of us joinging hands and gathering around him....covering him with healing wishes. I feel you all out there...your energy has held me up....and has provided me with a calm place to rest. Thank you!!!!
Blessings,
Sherri
After our wonderful Father's Day I noticed that Richard started looking more tired and seemed very lethargic. On Monday I watched him very closely...it's funny....at first I always think I'm the one that is going crazy or that my artistic, dramatic spirit is taking over and making really big things out of nothing...but he definately seemed "far away". He went to bed very early that evening and as I tucked him in he told me that he just didn't feel right. (Oh Great....he was noticing it too!!!) In the morning, when he still seemed to be having a difficult time waking up and began slurring his speech a little...I called the surgeon's office and spoke to one of his assistants. We had an appointment in Seattle on Wednesday to see the infectious disease doctor and so they told me to bring Richard earlier in the morning and they would check him out.
Emily went with us...and Richard slept all the way down. The walk from the garage to the doctor's office seemed like forever. We saw the surgeon's assistant, she asked her one million questions and Emily and I tried to describe to her what our concerns were. Richard was barely talking...other then to say he just needed to sleep. She said she would talk to the surgeon and that he may want to take an MRI and that she would call us on our cell phones if he wanted to do a scan that day. I left the office feeling sort of stupid....and Emily was angry and frustrated.
Dana met us at the Infectious Disease doctor's appointment and as we were waiting for the doctor Richard again fell asleep and was totally disengaged with our conversations. The kids were scared and I was incredibly anxious. When we finally saw the doctor I told him that I needed an advocate and that I felt like something horrible was going on with Richard. Richard tried to talk to him but it was obvious that he was struggling. Dr. Cairins made some calls and within 15 minutes we were back at the surgeon's office getting some attention.
The minute Dr. Foltz saw him he suggested that Rick stay overnight and that they take an immediate MRI and so some bloodwork to determine what was going on. To make a very long story a little shorter....basically after running all the tests....we were told the next morning that Richard's tumor had gotten much bigger and that surgery, at this point was not an option because of one arm of the tumor that reaches into a critical area for motor movement. After an examination the doctor determined that the tumor had already grown into the vision area of the brain and that Rick's left peripheal vision was totally gone. The symptoms that Richard was experiencing was from the swelling around this mass and the doctor began Richard immediately on steroids that would help with the swelling.
Later that day Dr. Foltz met with Richard, Pam (his wonderful sister) and I and it was decided that the next day (Friday) we would go to our oncologist in Everett and begin Avastin/CPT 11 (a chemo used typically for colon cancers...but that have recently been used with great success for treatment of breast and brain cancer) immediately. We were scheduled to begin that chemo in early July beause of the staph infection.....but the infection looked like it was under control and the doctors were suggesting that we not wait.
We were all devastated. I really can't even begin to describe how we were feeling...mainly numb and in deep shock. None of us expected this sort of vicious attack from this cancer and we were totally shocked. Pam and I moved into our efficient mode and contacted family and shared the grim news. Richard got pumped full of the mighty steroids which almost immediately made him feel better. We sat and waited for the next attack to begin.
Unfortunately when we arrived at our oncologist's office in Everett we were met with the horrible news that our insurance company had not OK'd the Avastin/CPT 11 treatment. Dr. Congdon explained that even he had called our insurance companies medical director but no one was calling them back. Again....another moment of total devastation and let down. I immediately called Richard's work and told them about our dilema and they began attacking from their end while Dr. Condon's office continued their attack. Meanwhile Richard, Pam and I got our "chemotherapy counseling" and "infusion room" tour and Richard got yet more blood work taken care of. Dr. Congdon scheduled Richard for having his port-a-cath (a permanent port put into a large vein near his heart that will make it so Richard doesn't need to be poked every time they need blood or everytime they need to give him anything...the vein is also big enough and strong enough to handle the toxicity of the chemo he'll be getting) put in early Monday morning and then his first round of chemotherapy will happen that afternoon. As we left Dr. Congdon's office....Richard's work called and his boss had spoken to the owner of the medical insurance company and everything was OK'd and the doctor was being notified. Alleluia!!!!
Phew....What a story......and phew what a nightmare for my poor husband. We still can't believe that this is happening. I don't know what we've been thinking but basically I think we've been working so hard to "beat" the statistics of GBM cancer that we NEVER allowed our minds to really go there and stay with the negative thoughts for very long. It seems like now......we are being forced to look at the vicious strength of this disease and raise the fight even higher than we have been. Richard and I are prepared to continue fighting with as much resolve and energy as possible. We are also so committed to making each moment full with attention and being. It is time....time for us to gather our family and friends around us and to remember all the many blessings that touch us throughout our days.
This weekend has been miraculous. Friday night Emily and Jason came over and we sat and hugged and cried and laughed and then hugged and cried and held hands and talked, talked, talked. It was hard but even hard has it's gracious parts and those are to be treasured. I watched my step-daughter grow that night....as she described her feelings, her fears, her love for her Dad. It was beautiful.
Yesterday we had a band of angels show up to do yard work with us. Oh my gosh!!!! In just a few hours our yard was transformed into the most beautiful place for Richard and I to look out on. What a wonderful gift for us!!!! It was amazing to just be surrounded by such love and giving. It felt so awesome. Thank you so much!!!
Wendy.....our beautiful friend....brought us many yummy meals (she has been providing food since this whole thing began) for our freezer. Cooking has been so hard for me (I don't get why.....but even boiling water seems challenging at this point). Wendy has always provided us with yummy treats to eat. She is amazing....and a fantastic cook.
Richard's Dad, Leo, is here now. He will take us to Everett in the morning and will come home with us tomorrow afternoon to help me with Richard. He is a dear man. Richard's Mom, Fran,will continue to do pet sitting while we're gone. Both of these people are in so much pain watching their son struggle. They have supported us so perfectly. The love and tenderness that they have approached this crisis with is beautiful to watch.
Please send Richard thoughts of strength and healing. He is strong....but he is sososo tired. He needs all of us joinging hands and gathering around him....covering him with healing wishes. I feel you all out there...your energy has held me up....and has provided me with a calm place to rest. Thank you!!!!
Blessings,
Sherri
Monday, June 16, 2008
Father's Day
Happy Father's Day Richard!!! Emily and Dana came over to our house bright and early and we all spent the whole day together. It was so wonderful for both Richard and I (the only thing that would have made it more perfect was if Alex was there too...he was missed!!!!). The day began with yummy, fresh roasted coffee as the kids told us about their previous evening's adventures. Then, as their Dad gave detailed instructions, they made our traditional peanut butter pancake breakfast. It was delicious....even the dogs enjoyed their own plate of pancakes with syrup and peanut butter, served by fork no less!!!!!The rest of the day was spent doing whatever felt right. Emily, Richard and I went to the Mall, quickly, to exchange some shoes that Dana had bought his Dad as a gift (they have been deemed the most comfortable shoes Richard has ever owned). The kids and I layed on a blanket and soaked up some rays as their Dad took a quick nap. We all sat on the deck and drank iced coffees, enjoying the warmth of the beautiful summer day. After Emily sadly went to work Dana, Richard and I finished a project down by the barn that Richard and his Dad had started a few weeks ago. Richard had thought up this amazing way of getting this HUGE tarp up over these poles that he and his Dad had put together in order to make a shelter for our motorhome/toyhome. Dana and I were in awe of the pulley system that Richard had devised with rope that unabled us to put the tarp over the poles and then tie it down with bungees, etc. Wow!!! The man is a genius!!! The day ended with hotdogs and Grandma Fran's famous potatoe salad and deviled eggs as we watched the basketball playoff game. Emily was back home by the end of the game and was able to partake in the hotdog feast!!!
When the kids left.....I looked over at my beautiful husband and saw a genuine smile on his face. He was exhausted.......but throughout the day he was good about sitting and letting us do things as he directed and he also took a nap and "rested his eyes" at times as we watched T.V. But still....I know that the day was long for him....but so important!!! He needed to "be" with his children. I think it was wonderful medicine.
I know that it was important for the kids too!!!! Our tendency, of course as parents, is to protect our children from experiences that are hard. But I am learning that "hard" can also have its own beauty and intimacy about it that is so unique and moving. We shouldn't always try to protect them from hard.....but maybe model what to do when hard hits and then stand beside them as they approach it and begin to experience it on their own. It's awful that this is happening to Emily, Dana and Alex...but as we've said before there are blessings that are constantly coming from this experience. These lessons are some of the many blessings.
The children need to make the same adjustments regarding their Dad's physical limitations just like Richard and I are having to do. I'm realizing how important it is to let them "take care" of their Dad, see his weaknesses, tend to his needs. They need to see Richard and I working together in this new reality of ours. I know now that we are teaching them, clumsily at times, about how to be compassionate and loving during difficult times and that this is a life lesson....a huge life lesson that they will carry with them forever.
You know...from our first date I knew that Richard was an amazing Father. When he spoke about his children his voice became soft and tender and his face glowed in a way that I had never seen before. His descriptions of his children touched me deeply. He was so proud of them and they obviously brought him tremendous joy. I could tell, without a doubt, that being a parent was, by far, his greatest joy and accomplishment. Before I even met his children I knew that they were blessed.
Over the years I have grown to know Richard as a parent intimately. I still feel so honored to sit amongst them as Richard shares advise, life experiences, suggestions and many lessons with his children. There is such love between the three of them....such admiration...such pride that circles all of them. I've never seen anything like it. They have a peaceful, easy rythym about them. They have been gracious in letting Alex and I join them.
I hope that you all had a fabulous weekend in the sun and warmth. We love you all and continue to feel your prayers and well wishes. Thank you for continuing to care about us with such dedication. It means so much.
Blessings,
Sherri
Tuesday, June 10, 2008
Sleepless Thoughts
Tonight I woke up with a start at about 1:00. After laying there with my thoughts I decided to get up and read for a while. After an hour, I reminded myself that tomorrow is another HUGE day for us...and wandered back to our bedroom to try to find sleep once again. As I got back into bed I listened carefully for Richard's familiar breathing, which is so comforting to me. As I lay there...I couldn't hear it....and so turned on my side, toward him, and reached my hand out to gently rest it on his rib cage. Soon I felt the rise and fall of his breath...and then he did our silent signal that everything is OK...he took one very deep breath...before returning to his usual rhythmic rise and fall. Comfort and relief washed over me. I stayed there for a while.....feeling so connected, so in love, and so safe.
Earlier in the evening I was feeling so horrible. Selfishly, after a very long day, I started missing Richard's way of nurturing me through difficult parts of my own chronic illnesses. He has tried lately....but really lacks the strength and attention to stay with me when something comes up....like painful joints, nausea or high blood sugars. I found myself so weary of carrying that all by myself...and I let myself feel resentful and frustrated....I guess angry at this whole thing that is happening to us. Then....as I looked at my precious husband laying there so weak and so tired....the familiar, immense hit of guilt took over and I immediately was faced with the ugliness of my own selfishness. I was ashamed of where my thoughts had taken me and felt so badly. There was nothing I could do to relieve the heaviness and pain surrounding my shallowness. I just had to sit with these thoughts and try to soothe my weak spirit.
This, too, seems to be an all too familiar part of this walk with Cancer. I've learned about my own strength and also a lot about my ugly parts.
Earlier in the evening I was feeling so horrible. Selfishly, after a very long day, I started missing Richard's way of nurturing me through difficult parts of my own chronic illnesses. He has tried lately....but really lacks the strength and attention to stay with me when something comes up....like painful joints, nausea or high blood sugars. I found myself so weary of carrying that all by myself...and I let myself feel resentful and frustrated....I guess angry at this whole thing that is happening to us. Then....as I looked at my precious husband laying there so weak and so tired....the familiar, immense hit of guilt took over and I immediately was faced with the ugliness of my own selfishness. I was ashamed of where my thoughts had taken me and felt so badly. There was nothing I could do to relieve the heaviness and pain surrounding my shallowness. I just had to sit with these thoughts and try to soothe my weak spirit.
This, too, seems to be an all too familiar part of this walk with Cancer. I've learned about my own strength and also a lot about my ugly parts.
Friday, June 6, 2008
Home Again!!!
We finally arrived home on Wednesday evening and we still don't feel quite caught up. We are feeling our way around a new routine, new limitations and trying desperately to take care of the house, the yard, the pets, the bills etc. It's amazing to me how life outside of "us" seems to continue even though we have been so isolated and so stuck...it feels like we have alot to do.
Richard is very weak and seems to tire easily. His pain is being managed with the pain regime he is on....although, at times, there seems to be break through owies!!! He's so good about letting me know and we get it covered and soon he's OK again. He can tell you anything there is to know about Obama and Clinton and is a weather whiz by now....CNN is usually on in the background and at times can hold his attention with its chatter. He's also reading a great book and that has been a blessing.
He's getting two different medications which are delivered once daily through his PICC line. Between both of us we are able to get it done. The whole thing takes about a hour. He also is giving himself an injection to thin his blood....because of the nasty little blood clots that seem to gather around his PICC lines :(!!! Of course there are various medications being given and the challenge of getting the man to eat.......but that is our "medical" routine...........I can see us getting it all down...smoother and smoother as time goes on. We were trained well at the hospital and by a "home health nurse" that visited us yesterday. She will come every Thursday to change the PICC dressing and to check on Richard's health status.
The new news....and probably the hardest for us to take....is that through two MRIs that were taken to assess the status of the infection....a new tumor was found behind the surgery site of the prior three craniotomys. We still are in such shock considering that his last MRI was four weeks ago...but we both know that this is how the GBM works.....when a cancer cell matures it is fast to make a new tumor. This growth is small....and is located in a place that if operated on will take away Richard's left peripheal vision.....so because of that and also because of the current infection he is not considered a good surgery risk. The recommendation is that we begin a new type of chemotherapy called Avastin/CPT 11 as soon as possible....we have an appointment with our oncologist in Everett on Monday afternoon and will know more then. If, by the time we replace the new plate over his surgery site (about 10 weeks away), a current MRI shows no change, then they will go in and remove the tumor.
Phew....that's alot to digest....no wonder I don't know what day of the week it is or how to spell "the". My heart breaks for my beautiful husband, our children, our family and our friends who have been praying so hard for a different type of result. My heart is breaking for me too.....I'm not that amazing!!!! I'm scared, I'm sosososo disappointed, I'm tired, I'm frozen, I'm angry, I'm hurting, I'm trying to just hang on and not let myself totally fall apart......maintaining through the grace of the Universe and the energy that is being sent our way.
Richard is staying strong. He has had his moments of despair....but I see that as a positive thing and I'm honored to be there with him when those times come. The hardest part is to just sit and "be" with him....there is no way I can make it better. I can only listen and hold his hand and "be". For those of you that know me.....that is sosososo hard. I can usually fix anything.....but this beast seems very difficult to tame.
Our time together is precious. Our dogs were so happy to see us. What a "Welcoming" we had. They still are sticking very close to us. They are the constant healers in our life.....always there to pet and to give that eyeful look.....loving us no matter what illness may come visiting. Our family and friends are absolutely amazing.....everyone helping, praying and supporting us so perfectly. We are strong because of all of you. You are our angels......all you do for us is so appreciated.
Blessings,
Sherri
Richard is very weak and seems to tire easily. His pain is being managed with the pain regime he is on....although, at times, there seems to be break through owies!!! He's so good about letting me know and we get it covered and soon he's OK again. He can tell you anything there is to know about Obama and Clinton and is a weather whiz by now....CNN is usually on in the background and at times can hold his attention with its chatter. He's also reading a great book and that has been a blessing.
He's getting two different medications which are delivered once daily through his PICC line. Between both of us we are able to get it done. The whole thing takes about a hour. He also is giving himself an injection to thin his blood....because of the nasty little blood clots that seem to gather around his PICC lines :(!!! Of course there are various medications being given and the challenge of getting the man to eat.......but that is our "medical" routine...........I can see us getting it all down...smoother and smoother as time goes on. We were trained well at the hospital and by a "home health nurse" that visited us yesterday. She will come every Thursday to change the PICC dressing and to check on Richard's health status.
The new news....and probably the hardest for us to take....is that through two MRIs that were taken to assess the status of the infection....a new tumor was found behind the surgery site of the prior three craniotomys. We still are in such shock considering that his last MRI was four weeks ago...but we both know that this is how the GBM works.....when a cancer cell matures it is fast to make a new tumor. This growth is small....and is located in a place that if operated on will take away Richard's left peripheal vision.....so because of that and also because of the current infection he is not considered a good surgery risk. The recommendation is that we begin a new type of chemotherapy called Avastin/CPT 11 as soon as possible....we have an appointment with our oncologist in Everett on Monday afternoon and will know more then. If, by the time we replace the new plate over his surgery site (about 10 weeks away), a current MRI shows no change, then they will go in and remove the tumor.
Phew....that's alot to digest....no wonder I don't know what day of the week it is or how to spell "the". My heart breaks for my beautiful husband, our children, our family and our friends who have been praying so hard for a different type of result. My heart is breaking for me too.....I'm not that amazing!!!! I'm scared, I'm sosososo disappointed, I'm tired, I'm frozen, I'm angry, I'm hurting, I'm trying to just hang on and not let myself totally fall apart......maintaining through the grace of the Universe and the energy that is being sent our way.
Richard is staying strong. He has had his moments of despair....but I see that as a positive thing and I'm honored to be there with him when those times come. The hardest part is to just sit and "be" with him....there is no way I can make it better. I can only listen and hold his hand and "be". For those of you that know me.....that is sosososo hard. I can usually fix anything.....but this beast seems very difficult to tame.
Our time together is precious. Our dogs were so happy to see us. What a "Welcoming" we had. They still are sticking very close to us. They are the constant healers in our life.....always there to pet and to give that eyeful look.....loving us no matter what illness may come visiting. Our family and friends are absolutely amazing.....everyone helping, praying and supporting us so perfectly. We are strong because of all of you. You are our angels......all you do for us is so appreciated.
Blessings,
Sherri
Tuesday, June 3, 2008
Hello from Camp Swedish!!!!
Sherri here.....still here.....
I got to sleep in Richard's room last night, since his Father and his wife came over from Wenatchee for a visit. No rooms were available at the Inn and so I gave them my room. Richard and I had sosososo much fun.....and we had a great nurse who was a blast. It was the perfect night after a very scary few days.
It is amazing being at the hospital this long....I have met some amazing care givers, nurses and doctors, some amazing loved ones of some very sick patients, some amazingly loving cleaning folks....well the whole thing has shown us many, many blessings. I think we're doing well when we can still be so touched by the kindness of so many.
I know that Richard and I are doing great...trying to decipher the information, making lists with our many questions, trying to keep everyone informed of what's happening and only crying in our most private moments. Everyday, I fall deeper in love with this miraculous man. His courage, patience and kindness has touched me deeply. There's always a thank you, always a smile no matter how awful he feels and always a compliance with whatever the team of docs are recommending. I am so proud of him. He is truly a man of beautiful grace.
Well...the doctors should be trickling in soon. I need to drink my first cup of Starbucks and get ready for whatever the day may bring.
Love to all. Thank you for sending so many prayers our way. We feel the peace of the "healing light"!!!!!
Love Sherri
I got to sleep in Richard's room last night, since his Father and his wife came over from Wenatchee for a visit. No rooms were available at the Inn and so I gave them my room. Richard and I had sosososo much fun.....and we had a great nurse who was a blast. It was the perfect night after a very scary few days.
It is amazing being at the hospital this long....I have met some amazing care givers, nurses and doctors, some amazing loved ones of some very sick patients, some amazingly loving cleaning folks....well the whole thing has shown us many, many blessings. I think we're doing well when we can still be so touched by the kindness of so many.
I know that Richard and I are doing great...trying to decipher the information, making lists with our many questions, trying to keep everyone informed of what's happening and only crying in our most private moments. Everyday, I fall deeper in love with this miraculous man. His courage, patience and kindness has touched me deeply. There's always a thank you, always a smile no matter how awful he feels and always a compliance with whatever the team of docs are recommending. I am so proud of him. He is truly a man of beautiful grace.
Well...the doctors should be trickling in soon. I need to drink my first cup of Starbucks and get ready for whatever the day may bring.
Love to all. Thank you for sending so many prayers our way. We feel the peace of the "healing light"!!!!!
Love Sherri
Right Combination, a quick upadate from Richard
I believe that the Doc's here have finally found the right combination of
-IV Vancomycin,
-IV Rocephin,
-and IV Levaquin, that is killing the bug causing the temperature!!! It has remained lower and I am feeling much better the last 24 hours. I am currently on all three. Thank you Kevin Swiss for the research article on incidence of infection following placement of Gliadel Wafers, http://www.gliadel.com/. Turns out that a large percentage of people getting these get these infections.
The real decision will come later this morning when the Infectious disease people come in along with the surgeon with the results from the cultures they are growing from the fluid they drew two days ago.
I am ready to get out of here!
My Love to All of you!
-IV Vancomycin,
-IV Rocephin,
-and IV Levaquin, that is killing the bug causing the temperature!!! It has remained lower and I am feeling much better the last 24 hours. I am currently on all three. Thank you Kevin Swiss for the research article on incidence of infection following placement of Gliadel Wafers, http://www.gliadel.com/. Turns out that a large percentage of people getting these get these infections.
The real decision will come later this morning when the Infectious disease people come in along with the surgeon with the results from the cultures they are growing from the fluid they drew two days ago.
I am ready to get out of here!
My Love to All of you!
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