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
Sunday, June 22, 2008
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!
Friday, May 30, 2008
An update from Sherri
Dana, Richard's son, has brought his computer to the hospital and he's letting me borrow it for a minute. We've had quite a week....crazy....busy....scary.....but today it has seemed that Richard has turned the corner and he is feeling better. We probably won't be home until Monday....because of setting up a visiting nurse to help us with the twice, daily infusions of antibiotics.
Richard didn't get out of the ICU until Wednesday evening.....that was a long time for us. The pain he was experiencing was sosososo horrible....they really gave him alot of medication in order to control it. In addition, there was alot of swelling and they were trying to decide if he needed to have a drain put into his head in order to drain off excess liquid that was collecting from the surgery site.....so it was very tense.
Since we have been on the main floor, he's been experiencing a temperature which has added to all the complications......lungs were crackling, head was hurting and basically he felt really bad. But....today it seems like all of the medications are working right together and we are making progress.
The type of infection he has is a epidermal staph infection which is one of the easiest to treat...so we will go home with an infusion set up and I will be hooking him up twice a day for his on-going antibiotics.....six weeks of that. Then after we're sure the infection is gone, we will come back here and he will have a plate surgically put back to cover his sweet, little brain. He's very excited....because until then he will have to wear a darling helmut whenever he is standing up (He looks like a gorgeous skateboarder...........). Yes....my artsy friends....it is just asking to be altered majorily.
So that is my update..... We have felt all the precious prayers and blessings coming our way. This has been ssososososo frightening......he was in tremendous pain. Thank you to Joanne and Kevin Swiss and Betsey for being there for us when we were at St. Joe's. Joanne actually drove us to the hospital as I held Richard's head (It was awful!!!!). Betsey and Janelle have been awesome.....such treasures..... Both of our families have been amazing. We are so very blessed.
Until my next chance to post this will have to be it!!!! We love you all!!!
Blessings,
Sherri
Richard didn't get out of the ICU until Wednesday evening.....that was a long time for us. The pain he was experiencing was sosososo horrible....they really gave him alot of medication in order to control it. In addition, there was alot of swelling and they were trying to decide if he needed to have a drain put into his head in order to drain off excess liquid that was collecting from the surgery site.....so it was very tense.
Since we have been on the main floor, he's been experiencing a temperature which has added to all the complications......lungs were crackling, head was hurting and basically he felt really bad. But....today it seems like all of the medications are working right together and we are making progress.
The type of infection he has is a epidermal staph infection which is one of the easiest to treat...so we will go home with an infusion set up and I will be hooking him up twice a day for his on-going antibiotics.....six weeks of that. Then after we're sure the infection is gone, we will come back here and he will have a plate surgically put back to cover his sweet, little brain. He's very excited....because until then he will have to wear a darling helmut whenever he is standing up (He looks like a gorgeous skateboarder...........). Yes....my artsy friends....it is just asking to be altered majorily.
So that is my update..... We have felt all the precious prayers and blessings coming our way. This has been ssososososo frightening......he was in tremendous pain. Thank you to Joanne and Kevin Swiss and Betsey for being there for us when we were at St. Joe's. Joanne actually drove us to the hospital as I held Richard's head (It was awful!!!!). Betsey and Janelle have been awesome.....such treasures..... Both of our families have been amazing. We are so very blessed.
Until my next chance to post this will have to be it!!!! We love you all!!!
Blessings,
Sherri
Monday, May 26, 2008
Richard's Update
I'm writing this post for Sherri and Richard, since they have been at Swedish Hospital in Seattle for the past few days. They wanted everyone to know about the recent events that have unfolded. On Saturday, Sherri had to take Richard to our local ER becuase he was experiencing a high level of pain in his head. The doctors there could not find the cause and felt he should go back down to Swedish Hospital where he was originally treated. By the time he arrived, it had become apparent that Richard was developing a serious infection. Within two hours he was in emergency surgery. The surgery showed that the infection had made its way into the bone above his right temporal lobe. The bone was removed and cultures were taken to determine the cause of the infection which they are still awaiting the results for. Richard is now in intensive care recieving a number of antibiotics to treat the infection as well as medication to try and control his pain. The hope is to return home later this week with IV antibiotics for the next six weeks. In about 2 months he will have to undergo another surgery to have a metal plate placed in the same spot from where the bone was previously taken.I will continue to keep everyone updated on Richard's progress as I recieve more information. Please keep both Richard and Sherri in your prayers during this difficult time...
Update By: Betsey
Update By: Betsey
Saturday, May 17, 2008
Celebrate!
Ahhh. looking forward to today.. Sherri, Alex and I spent yesterday scrubbing the deck, mowing the grass and collecting things (chocolate cake, beer, etc.;-) that we will need for the party today. It will be fun to have everyone here, cook some food on the grill outside and relax and have fun on this beautiful day. Costco was selling these wonderful vegetarian hot dogs made by Tofurky and we have collected a supply for today, My Mother is bringing her excellent potato salad, and along with other assorted picnik food and drink that shows up, we will all have a summer BBQ dinner.
The disraction will be welcome for us. As Sherri mentioned, it has been hard this time. As much as we try to stay positive, there are moments when that is really difficult. I have had constant pain the last week requiring Ibuprofen which helps. I am woken frequently by the light sound of gurgling of the subcutaneous fluid over the surgical site. Not sure if it's gurgling in or out.. but the swelling IS getting smaller day by day.
We are scheduled for two appointments this week in Seattle with the Oncologist Tuesday and surgeon on Thursday. So we will of course keep you updated.
The kind and loving words and thoughts are so appreciated. Sher and I are learning so much about the power of Love through this experience. You are all our most beloved teachers.
With Love
Richard
The disraction will be welcome for us. As Sherri mentioned, it has been hard this time. As much as we try to stay positive, there are moments when that is really difficult. I have had constant pain the last week requiring Ibuprofen which helps. I am woken frequently by the light sound of gurgling of the subcutaneous fluid over the surgical site. Not sure if it's gurgling in or out.. but the swelling IS getting smaller day by day.
We are scheduled for two appointments this week in Seattle with the Oncologist Tuesday and surgeon on Thursday. So we will of course keep you updated.
The kind and loving words and thoughts are so appreciated. Sher and I are learning so much about the power of Love through this experience. You are all our most beloved teachers.
With Love
Richard
Friday, May 16, 2008
Happy Birthday Dear Richard!!!
Yesterday was Richard's birthday.....and it was a "you can do anything you want" kind of day...where we mainly took care of business, took the dogs swimming and then ended with dinner with Emily, Jason and Betsey. It was the perfect day.....the sun shining, warm, easy to be outside.....
This weekend promises to be a big one for our family. Everyone is gathering to formerly celebrate Rick's birthday on Saturday afternoon. We're planning a barbecue.....and it looks like most of our family will make it.....even his sister, Pam, and her husband from Everett are coming and also Rick's Dad from Wenatchee will be joining us for a few days. All the kids will be home too!!!!!!! And.....I can't forget our Mothers.....they will both be in attendance. Richard is really looking forward to it. I'm wondering, a little, how we're exactly going to handle the whole thing but I think we'll be OK. I know we will be OK.
Of course....everyday seems to bring new issues, challenges, and, thankfully, some beautiful blessings. Honestly....I see my husband struggling a bit and that is horrible to watch. The helplessness I feel and also the fear, at times, can be so intense....breath taking in a way.....He seems to move away from me....very far away.... Yesterday afternoon he got very tired and he stopped talking pretty much....just looked at me as if he had something to say.....but he couldn't collect it all together to put it into words. He'd mumble, "tired" or "hurting", and then just stare at the TV as if that was about all he could muster. Even dinner out seemed exhausting and when we got home I put him in bed, took his temp. (normal), rubbed his little head, and began my prayers to the Universe.........then I called my dear sister and she helped me sort it all out. Phew!!!! This is such a damn trip!!!!! Brain tumors, surgery, cancer, chemotherapy, brain trauma....none of it is easy for the patient. It is a shame....such a horrible shame.
What I know is that we have more moments of grandeur then we do of being lost. What I know is that together we are amazing. What I know is that we are learning to "live" with ALL of this, maybe not fighting it as much, but learning to live with it in a wierdly peaceful sort of way. What I know is that my husband is beautiful and grand. He still is surrounded by such a golden hue...twinkling as he walks, emitting love, joy, compassion. What I know is that he is gathering it all into a very deep space.....to his spirit.....and that he is healing and trying desperately to remain present for this part of the journey. What I know is that we love each other and that it is that love that we are giving others....opening to others....it is way big love....way beautiful love!!!!
Sometimes I know that we are grasping at each other and at the world....hanging on with a fierceness that is exhausting. I'm learning that it isn't necessary to do that.....that lightly touching the world is enough right now. We won't fall away and go to scary places. We are surrounded by hands that are holdinng us, warm that is protecting us from falling away forever. I am sad. I am still in awe that this is happening. I am aware that I am part of a miracle somehow.
Happy Birthday my beloved. You are loved by so many. People are out there watching you in total amazement.....wanting to sit by you and just be with you.
My love to all,
Love Sherri
This weekend promises to be a big one for our family. Everyone is gathering to formerly celebrate Rick's birthday on Saturday afternoon. We're planning a barbecue.....and it looks like most of our family will make it.....even his sister, Pam, and her husband from Everett are coming and also Rick's Dad from Wenatchee will be joining us for a few days. All the kids will be home too!!!!!!! And.....I can't forget our Mothers.....they will both be in attendance. Richard is really looking forward to it. I'm wondering, a little, how we're exactly going to handle the whole thing but I think we'll be OK. I know we will be OK.
Of course....everyday seems to bring new issues, challenges, and, thankfully, some beautiful blessings. Honestly....I see my husband struggling a bit and that is horrible to watch. The helplessness I feel and also the fear, at times, can be so intense....breath taking in a way.....He seems to move away from me....very far away.... Yesterday afternoon he got very tired and he stopped talking pretty much....just looked at me as if he had something to say.....but he couldn't collect it all together to put it into words. He'd mumble, "tired" or "hurting", and then just stare at the TV as if that was about all he could muster. Even dinner out seemed exhausting and when we got home I put him in bed, took his temp. (normal), rubbed his little head, and began my prayers to the Universe.........then I called my dear sister and she helped me sort it all out. Phew!!!! This is such a damn trip!!!!! Brain tumors, surgery, cancer, chemotherapy, brain trauma....none of it is easy for the patient. It is a shame....such a horrible shame.
What I know is that we have more moments of grandeur then we do of being lost. What I know is that together we are amazing. What I know is that we are learning to "live" with ALL of this, maybe not fighting it as much, but learning to live with it in a wierdly peaceful sort of way. What I know is that my husband is beautiful and grand. He still is surrounded by such a golden hue...twinkling as he walks, emitting love, joy, compassion. What I know is that he is gathering it all into a very deep space.....to his spirit.....and that he is healing and trying desperately to remain present for this part of the journey. What I know is that we love each other and that it is that love that we are giving others....opening to others....it is way big love....way beautiful love!!!!
Sometimes I know that we are grasping at each other and at the world....hanging on with a fierceness that is exhausting. I'm learning that it isn't necessary to do that.....that lightly touching the world is enough right now. We won't fall away and go to scary places. We are surrounded by hands that are holdinng us, warm that is protecting us from falling away forever. I am sad. I am still in awe that this is happening. I am aware that I am part of a miracle somehow.
Happy Birthday my beloved. You are loved by so many. People are out there watching you in total amazement.....wanting to sit by you and just be with you.
My love to all,
Love Sherri
Monday, May 12, 2008
Finally...a moment!!!
Richard is all tucked into his favorite chair watching the news...and I'm finally able to collect my thoughts a little bit. My fingers are having a hard time working because my hands, wrists and elbows are pretty sore from knitting non-stop for the last few days. I think I have to take a break from that activity for a while since arthritis hates repetitive movement when it is done in a compulsive, frantic way!!!! The knitting has been a wonderful activity for all the sitting I've been doing....I have to keep busy somehow.... I'm moving on to Soduko however!!!
We really are doing very well considering that my husband just had brain surgery and has six chemotherapy wafers in his head....oozing continual chemotherapy directly to his brain. He's on lots of medication....all aimed at keeping his brain as stable as possible.....things to help with swelling, things to help with pain, things to help control possible seizsure activity, things to help his stomach because of all the other things....Just keeping up with the medicine delivery has been a challenge for me but I think we are doing pretty good.
The hospital experience was amazing. I am so thankful for the support of my sister-in-law and my wonderful step-son Dana. I am also deeply touched by my two beautiful nephews, their wives and children who provided food, wonderful soothing tea and visits that were warm and sosososo lovely. And.......the delivery of the most beautiful cupcakes from Pam's friend Peggy....Oh my gosh that was sososo awesome!!!!! Those cupcakes were worth the extra shot of insulin I had to take!!!!
I continue to be in total awe of the doctors, nurses and other medical professionals that we were working with down at Swedish. Dr. Foltz, Richard's surgeon, is such a warm, loving man....while at the same time being a total genius. We have been so blessed in finding both him and Dr. Mayberg and their staffs. They are all amazing. Richard was tenderly cared for through the entire experience. A couple of times I caught myself tearing up when someone was particularly loving....well to be honest it happened all the time...... All of them were so wonderful.
I have to also comment here on my step-son, Dana. What a wonderful man!!! Prior to Richard's diagnosis Dana has always talked about his weak stomach regarding blood and hospitals. I have had the priviledge of watching this young man face his fears with such courage and grace. During both surgeries Dana has stood beside his Father and I through every scary step. He has been calm, loving, tender, funny, willing to do anything.....but most importantly he has been present with his Dad and with I during some very difficult conversations and procedures. I know how frightening this must be for him....but he is letting himself feel the pain, the fear, the sadness....and he has become one of my heros!!!! I can't thank him enough for being there during the past few days.... He just left this afternoon to return to Seattle and his job....but I knew he was hesitating until the moment he got on the bus..... I promise Dana we will be O.K.......but we will miss you until next weekend!!!!
I am thankful to be home in our little house. We both love it here so much. We have created a haven here and it is the perfect place for Richard to heal.
Thank you everyone for sending your prayers and special thoughts. We felt every one of them.
Love Sherri
We really are doing very well considering that my husband just had brain surgery and has six chemotherapy wafers in his head....oozing continual chemotherapy directly to his brain. He's on lots of medication....all aimed at keeping his brain as stable as possible.....things to help with swelling, things to help with pain, things to help control possible seizsure activity, things to help his stomach because of all the other things....Just keeping up with the medicine delivery has been a challenge for me but I think we are doing pretty good.
The hospital experience was amazing. I am so thankful for the support of my sister-in-law and my wonderful step-son Dana. I am also deeply touched by my two beautiful nephews, their wives and children who provided food, wonderful soothing tea and visits that were warm and sosososo lovely. And.......the delivery of the most beautiful cupcakes from Pam's friend Peggy....Oh my gosh that was sososo awesome!!!!! Those cupcakes were worth the extra shot of insulin I had to take!!!!
I continue to be in total awe of the doctors, nurses and other medical professionals that we were working with down at Swedish. Dr. Foltz, Richard's surgeon, is such a warm, loving man....while at the same time being a total genius. We have been so blessed in finding both him and Dr. Mayberg and their staffs. They are all amazing. Richard was tenderly cared for through the entire experience. A couple of times I caught myself tearing up when someone was particularly loving....well to be honest it happened all the time...... All of them were so wonderful.
I have to also comment here on my step-son, Dana. What a wonderful man!!! Prior to Richard's diagnosis Dana has always talked about his weak stomach regarding blood and hospitals. I have had the priviledge of watching this young man face his fears with such courage and grace. During both surgeries Dana has stood beside his Father and I through every scary step. He has been calm, loving, tender, funny, willing to do anything.....but most importantly he has been present with his Dad and with I during some very difficult conversations and procedures. I know how frightening this must be for him....but he is letting himself feel the pain, the fear, the sadness....and he has become one of my heros!!!! I can't thank him enough for being there during the past few days.... He just left this afternoon to return to Seattle and his job....but I knew he was hesitating until the moment he got on the bus..... I promise Dana we will be O.K.......but we will miss you until next weekend!!!!
I am thankful to be home in our little house. We both love it here so much. We have created a haven here and it is the perfect place for Richard to heal.
Thank you everyone for sending your prayers and special thoughts. We felt every one of them.
Love Sherri
Sunday, May 11, 2008
Home.. at last
We made it how about 3:00 PM on Saturday afternoon. Dana served as the driver which gave me a wonderful break in the back seat to snooze an listen to the delightful chatter of my loved one's coming from the front. We were checked out and home in no time after a stop at the Swedish pharmacy for my medications. Dr. Foltz was wonderful stopping by sometimes twice a day to check on us us and admire his stitching job on my head . of which he was VERY proud! This photo was taken while I was in the ICU the evening of the surgery.
I am feeling great.. as you might imagine, the right side of my head feels puffy and sore and I have trouble hearing out that right ear.
I want to thank everyone for the kind and thoughtful words and energy you have sent my way. It really has helped me helped me make it through this experience.
My deepest love and gratitude to all.
Richard
I am feeling great.. as you might imagine, the right side of my head feels puffy and sore and I have trouble hearing out that right ear.I want to thank everyone for the kind and thoughtful words and energy you have sent my way. It really has helped me helped me make it through this experience.
My deepest love and gratitude to all.
Richard
Tuesday, May 6, 2008
The Day Before We Leave!
We just heard from Swedish and Richard's surgery is schedule for some time around 12:00 p.m. (high noon...or close to it!) on Thursday. No matter how badly I want time to slow down time just moves faster and faster and I feel like I'm hanging on with all my might as the wind challenges me to stay connected. These last few days have been excruciatingly long and painful as we anticipate this surgery. Richard keeps saying, "It's just brain surgery" but even those words feel pretty awesome to me. Brain Surgery sounds so ominous. I remember Dr. Foltz telling us, last time, that brain surgery really isn't that hard??????? Oh my gosh....how can that be?
I'm trying desperately to provide a little calmness and sanity here at home for Richard. I'm beyond knowing what else I can do when I know that he is feeling so sad about this turn of events. I really think we both thought we would be the exception to how Glioblastomas "usually" act and that Richard was going to fly through this disease with just a blip on our radar. To have a recurrence so soon has been very difficult for both of us....but especially for him.
I keep reminding both of us about the wonderful quality of life that we still have. That seems so worth fighting for. Sometimes cancer is so huge...especially Glioblastoma Brain Cancer but our spirits are huge and together with our families and friends we can continue fighting. I know how hard it is to keep it up.....I see it in his beautiful eyes and in his shoulders as he holds the weight of this so bravely. I try, feebly, to help and to take care of the details...but sometimes that just doesn't feel like enough.
I don't know what will come with this surgery....I mean I'm envisioning my beautiful husband opening his eyes and smiling widely at me...immediately saying that he is OK. I'm envisioning him wiggling all his fingers and toes on command and making his usual request for something cheesy and for a triple tall Starbucks Americano with half & half. I'm envisioning grabbing his beautiful hand and holding it softly.....rubbing his arm....and feeling him squeeze my hand with assurance and warmth. I can't wait to rub his head....he loves that now... I can't wait to look into his soft eyes and see the wisdom and love that always is there. Then I will be O.K. Then we will be O.K. and we can start healing from this phase.
I feel everyone thinking of us and wishing us well. Thank you!!! So many of you have stuck by us through the past eight months.. We have been so blessed with tremendous support and love. It has meant a great deal to both of us. This journey has taught us so much.....but especially about the value of true friendship. As I sit quietly...trying to calm the many thoughts in my head....I often feel a warmth and peace begin to cover me. I know that that is all my beautiful angels sending us well wishes and prayers. It is such a treasure to have all of you so very near.
Love, love, love Sherri
I'm trying desperately to provide a little calmness and sanity here at home for Richard. I'm beyond knowing what else I can do when I know that he is feeling so sad about this turn of events. I really think we both thought we would be the exception to how Glioblastomas "usually" act and that Richard was going to fly through this disease with just a blip on our radar. To have a recurrence so soon has been very difficult for both of us....but especially for him.
I keep reminding both of us about the wonderful quality of life that we still have. That seems so worth fighting for. Sometimes cancer is so huge...especially Glioblastoma Brain Cancer but our spirits are huge and together with our families and friends we can continue fighting. I know how hard it is to keep it up.....I see it in his beautiful eyes and in his shoulders as he holds the weight of this so bravely. I try, feebly, to help and to take care of the details...but sometimes that just doesn't feel like enough.
I don't know what will come with this surgery....I mean I'm envisioning my beautiful husband opening his eyes and smiling widely at me...immediately saying that he is OK. I'm envisioning him wiggling all his fingers and toes on command and making his usual request for something cheesy and for a triple tall Starbucks Americano with half & half. I'm envisioning grabbing his beautiful hand and holding it softly.....rubbing his arm....and feeling him squeeze my hand with assurance and warmth. I can't wait to rub his head....he loves that now... I can't wait to look into his soft eyes and see the wisdom and love that always is there. Then I will be O.K. Then we will be O.K. and we can start healing from this phase.
I feel everyone thinking of us and wishing us well. Thank you!!! So many of you have stuck by us through the past eight months.. We have been so blessed with tremendous support and love. It has meant a great deal to both of us. This journey has taught us so much.....but especially about the value of true friendship. As I sit quietly...trying to calm the many thoughts in my head....I often feel a warmth and peace begin to cover me. I know that that is all my beautiful angels sending us well wishes and prayers. It is such a treasure to have all of you so very near.
Love, love, love Sherri
Friday, May 2, 2008
Realization..
As I said We found out Tuesday that I need another surgery.. no big deal really.. just brain surgery.. ;-(.. Actually, the doc's said that it was much easier the second time.. "just take out a few screws, lift off the plate & I'm there.." I think this means it's easier for him.. don't you think? Actually, it wasn't that hard the first time.. I was only in the hospital for two nights… this time prob.. 1.
It's so hard to believe!!!
I'm really having a difficult time wrapping my head around preparing for another surgery. If I'm having a hard time, I can only imagine what Richard must be feeling. Since we have been through this once.....one would think that it would be easier......but in actuality......I think because we've been through it once it may be more difficult the second time.
Since our appointment with the neurosurgeons....Foltz & Mayberg (I like to think of them like a well trained vaudeville act....I can just see them with their canes and top hats, doing a little tap dance, singing to Richard as he drifts off to sleep)...I've been working on getting everything lined up and ready to go for next week. I felt a little anxious about doing something different than what the oncologist (Dr. Congdon) had suggested....and I finally spoke to him today and went over the plan. He thinks that since the Swedish team sees surgery as the best option it is an opportunity to see exactly what the abnormal tissue is.. He also agrees with the use of the Glidadel Wafers (scary to me!!!) that will be left laying on the tumor site. He explained that it is the only way to get chemotherapy directly on the active area. In addition he said that chemotherapy is delivered 24/7 for about six weeks and that that is an amazing delivery rate. Apparently there are very few side effects and the wafers just dissolve over time. Hmmmmmmmm. Sounds kind of spooky to me for some reason.
Actually I think this all is pretty alarming right about now. I hate it that Richard has to go through another surgery. I hate it that all of our hard work at creating a tumor free scenario did not work. And I'm really disappointed that we all have to be more afraid and shakey. We can do it...and we'll do it well....but I hate it!!!!
There's so much that I want to share....but I lack any sort of emotion right now. Also it seems that my creative button has been turned off today. I know that this is the Universes way of taking care of me....putting me in "efficiency mode" and letting me avoid the pain for a while. I'm glad that the weekend is here. Richard and I need some time to "let go" and relax. That will feel so good.
A side note is that Richard and I are thinking constantly of our friend Helen whose 32 year old daughter died this week. What a horrible thing....I can't imagine. We are keeping her and her family in our prayers. I love you Helen. I am sending you strength, peace and hope. I know that Jen was a very special woman. I am so sorry.
Namaste my friends. I truly love you all.
Love Sherri
Since our appointment with the neurosurgeons....Foltz & Mayberg (I like to think of them like a well trained vaudeville act....I can just see them with their canes and top hats, doing a little tap dance, singing to Richard as he drifts off to sleep)...I've been working on getting everything lined up and ready to go for next week. I felt a little anxious about doing something different than what the oncologist (Dr. Congdon) had suggested....and I finally spoke to him today and went over the plan. He thinks that since the Swedish team sees surgery as the best option it is an opportunity to see exactly what the abnormal tissue is.. He also agrees with the use of the Glidadel Wafers (scary to me!!!) that will be left laying on the tumor site. He explained that it is the only way to get chemotherapy directly on the active area. In addition he said that chemotherapy is delivered 24/7 for about six weeks and that that is an amazing delivery rate. Apparently there are very few side effects and the wafers just dissolve over time. Hmmmmmmmm. Sounds kind of spooky to me for some reason.
Actually I think this all is pretty alarming right about now. I hate it that Richard has to go through another surgery. I hate it that all of our hard work at creating a tumor free scenario did not work. And I'm really disappointed that we all have to be more afraid and shakey. We can do it...and we'll do it well....but I hate it!!!!
There's so much that I want to share....but I lack any sort of emotion right now. Also it seems that my creative button has been turned off today. I know that this is the Universes way of taking care of me....putting me in "efficiency mode" and letting me avoid the pain for a while. I'm glad that the weekend is here. Richard and I need some time to "let go" and relax. That will feel so good.
A side note is that Richard and I are thinking constantly of our friend Helen whose 32 year old daughter died this week. What a horrible thing....I can't imagine. We are keeping her and her family in our prayers. I love you Helen. I am sending you strength, peace and hope. I know that Jen was a very special woman. I am so sorry.
Namaste my friends. I truly love you all.
Love Sherri
Thursday, May 1, 2008
Surgery May 8th
Sherri surprised me with a night at the Heron B&B in La Conner for our 3ed Anniversary. Here is a pic of our great room with it's giant jetted tub. The next morning we ventured to Swedish to talk with Dr. Mayberg and Dr. Foltz about their reading of my most recent MRI.
We were hoping of course for better, but we returned scheduled for a second surgery next Thursday.
1 in 3 chance it is radiation necrosis, for which they will just sew me up & send me home. 2 in 3 chance it is tumor re-growth, .. they,.. Gregory Foltz will be the primary, and Marc Mayberg will be assisting, will remove the tissue, and place Gliadel wafers on the resection site.
Sherri and I have things planned out up to the surgery date.. and help and support is in the plenty.. for now.
1 in 3 chance it is radiation necrosis, for which they will just sew me up & send me home. 2 in 3 chance it is tumor re-growth, .. they,.. Gregory Foltz will be the primary, and Marc Mayberg will be assisting, will remove the tissue, and place Gliadel wafers on the resection site.
Sherri and I have things planned out up to the surgery date.. and help and support is in the plenty.. for now.
Friday, April 25, 2008
Amazing
I know that most of you have read Richard's post from this morning...but all morning I've been hearing our blog calling out and I felt like I wanted to post...but also felt a little frightened to post. Right now, I'm trying desperately to keep my wits about me because I know that we will be continually analyzing lots of information over the next two weeks....and I have to be clear and organized. Also...I know that I want to take loving care of my beautiful husband...be totally present with him, savoring every moment of our time together. That will take alot of emotional energy...energy well spent....believe me....it's an honor to stand beside this man through this experience...but I have to remain strong.
The news, yesterday, was truly devastating for all of us. Listening to the grim details of this recurrence was difficult but the worst part was, of course, telling our children, our families and our precious friends. We were able to move through it....together and we are doing O.K....one step at a time.
As we lay in bed last night....we finally cried. It was so wonderfully horrible.....so perfect. We had kept it together until we were safe...and then finally we were able to hold one another and let our hearts open with the pain and agony that has to be controlled most of the time as we march forward in this war against brain cancer. I don't know if my heart, my mind, my soul, my spirit has every hurt that badly. Now as I write this I really don't know if this pain can even be described at all. But laying, safely, in my husband's arms...I knew that I wanted to be no where else on earth. Even though the pain and sadness was horrible, I knew that by doing this I was going to be fine.....
Humorously....I know I am strong and capable...amazingly so....and I try to be BIG and TOUGH. Sometimes I can get pretty cocky about my strength through difficult situations. But I always have these barometers in my life that seem to keep me in check. I just went in to check my blood sugar before I eat lunch and it was over 400 (normal is 75-100)....oops. In my haste to get to the cancer center this morning...for our last appointment with the clinical trial nurse.....I forgot to give my long-acting insulin injection.....that and the stress make my blood sugars very brittle. HMMMMMM....I can pretend....but I always have reality smacking me in the face. I guess that on some level that is good.
My love today is so very close....love for Richard, my family, my precious friends, my dogs and the cat that really doesn't like me much.....I'm just full of love. I am touched by the care and warmth that is being sent our way....I can literally feel it, deep in my soul. Please take a moment and touch the ones you love this weekend....do it for us!!!! Let our experience remind all of us about the importance of love.........
I am holding you all very near.
Blessings,
Sherri
The news, yesterday, was truly devastating for all of us. Listening to the grim details of this recurrence was difficult but the worst part was, of course, telling our children, our families and our precious friends. We were able to move through it....together and we are doing O.K....one step at a time.
As we lay in bed last night....we finally cried. It was so wonderfully horrible.....so perfect. We had kept it together until we were safe...and then finally we were able to hold one another and let our hearts open with the pain and agony that has to be controlled most of the time as we march forward in this war against brain cancer. I don't know if my heart, my mind, my soul, my spirit has every hurt that badly. Now as I write this I really don't know if this pain can even be described at all. But laying, safely, in my husband's arms...I knew that I wanted to be no where else on earth. Even though the pain and sadness was horrible, I knew that by doing this I was going to be fine.....
Humorously....I know I am strong and capable...amazingly so....and I try to be BIG and TOUGH. Sometimes I can get pretty cocky about my strength through difficult situations. But I always have these barometers in my life that seem to keep me in check. I just went in to check my blood sugar before I eat lunch and it was over 400 (normal is 75-100)....oops. In my haste to get to the cancer center this morning...for our last appointment with the clinical trial nurse.....I forgot to give my long-acting insulin injection.....that and the stress make my blood sugars very brittle. HMMMMMM....I can pretend....but I always have reality smacking me in the face. I guess that on some level that is good.
My love today is so very close....love for Richard, my family, my precious friends, my dogs and the cat that really doesn't like me much.....I'm just full of love. I am touched by the care and warmth that is being sent our way....I can literally feel it, deep in my soul. Please take a moment and touch the ones you love this weekend....do it for us!!!! Let our experience remind all of us about the importance of love.........
I am holding you all very near.
Blessings,
Sherri
MRI report , new challenges
It was a difficult day. The 4/22 MRI does show findings consistent with recurrence. Dr. Congdon is hopeful and says there are some good options for treatment. His office is setting up appointments with Cyber-knife and neuro-surgical offices at Swedish in Seattle. I will need different chemo-therapy and will be dropped from the RTOG 2025 clinical trial. It apparently was not working anyway.. The Temador does prevent tumor growth in some people, but apparently not all.
We thank you all for your continued prayers and support and will keep you posted on developments as they arise.
With Love
Richard
We thank you all for your continued prayers and support and will keep you posted on developments as they arise.
With Love
Richard
Wednesday, April 23, 2008
Today is MRI day!!!
I have been suffering from a horrible case of PMS (pre-MRI-syndrome)....which means...not sleeping well, having trouble with motivation, very emotional, craving fish-n-chips, spending long moments staring at Richard, spending long moments doing absolutely nothing and participating in lots of household wandering. I know it will be over soon....but right now soon can't come fast enough. Richard's MRI is at 3:30 followed by some more bloodwork and then an evening, home together staying as busy as possible.
What a ride!!! That's all I can say. This past month has been more difficult than the others which I know is due to the "enhancement" on the last MRI and the concern that has followed. Richard has been, I believe, feeling more down.....well.....I know he has because he has said so. Maybe we have come to a place of acceptance...especially the acceptance of what a "long" journey this is going to be and an acceptance of the challenge to keep moving forward in the manner that we both want to. Looking back....it has been absolutely exhausting for both of us....but especially for Richard.
I wish that "loving" was enough....if that were so...we both would be sailing through this with ease. But sometimes the fear, the lack of clarity, the inability to make plans, the way this has made us sosososo different from other's....sometimes our love isn't enough.... I've come to accept that nothing will make these moments of struggle easier.....just trusting that it will pass is what gets us through.
Richard is so tired...from the effects of the chemo, the radiation and even,,.still...the brain surgery. He is weak, has lost weight, is mentally weary...and seems to cherish those moments of quiet. But yet I feel his frustration with his lack of stamina...his inability to do all the things he use to do. I try, desperately, to help pick up the slack...so that maybe he won't notice the things that have gone "undone"....but I, too, seem limited these days in the area of energy. He still remains such a teacher.....He sighs...and then reminds me how important contentment is as part of this journey. We've done enough, we have enough, we are enough.......
Pray for Richard today....as he travels into that scary machine....and has his picture taken. I feel you loving us....that is what truly is giving us strength to continue. We love you all....so much......
Love Sherri
What a ride!!! That's all I can say. This past month has been more difficult than the others which I know is due to the "enhancement" on the last MRI and the concern that has followed. Richard has been, I believe, feeling more down.....well.....I know he has because he has said so. Maybe we have come to a place of acceptance...especially the acceptance of what a "long" journey this is going to be and an acceptance of the challenge to keep moving forward in the manner that we both want to. Looking back....it has been absolutely exhausting for both of us....but especially for Richard.
I wish that "loving" was enough....if that were so...we both would be sailing through this with ease. But sometimes the fear, the lack of clarity, the inability to make plans, the way this has made us sosososo different from other's....sometimes our love isn't enough.... I've come to accept that nothing will make these moments of struggle easier.....just trusting that it will pass is what gets us through.
Richard is so tired...from the effects of the chemo, the radiation and even,,.still...the brain surgery. He is weak, has lost weight, is mentally weary...and seems to cherish those moments of quiet. But yet I feel his frustration with his lack of stamina...his inability to do all the things he use to do. I try, desperately, to help pick up the slack...so that maybe he won't notice the things that have gone "undone"....but I, too, seem limited these days in the area of energy. He still remains such a teacher.....He sighs...and then reminds me how important contentment is as part of this journey. We've done enough, we have enough, we are enough.......
Pray for Richard today....as he travels into that scary machine....and has his picture taken. I feel you loving us....that is what truly is giving us strength to continue. We love you all....so much......
Love Sherri
Monday, April 14, 2008
La la Monday, Monday!!!!
Look at these precious pictures. My nephew Christoper and his beautiful wife Kim stopped by on their visit to see my sister in Blaine. They brought Nevia...our great niece...and Emily, Richard and I ooooohed and aaaaahed all over her. It was a magical visit. My nephew and his wife are such awesome people. I am very proud of them. I know how busy they are. It meant so much to have them take the time to bring Nevia to see us. My heart was so full the entire time they were with us. Watching my nephew tend to his family was quite moving and his wife is a tender, sweet Mommy who so is refreshing, calm and confident.
And the baby...I cannot tell you how magical it was to have a beautiful, wise baby in the house. She is amazing (I know...all babies are amazing...but this one is pretty special). I can't even begin to share with you the emotions I felt when Richard picked her up and began playing with her. It was as if I was watching one wise soul speaking to another. She saved all her grins and giggles for Uncle Richard and we all watched in awe. Emily was the photographer....and I think she caught the absolute miracle of the moments with Nevia. It was a blessed afternoon with them.
As most of you know....I spent four days away at an art retreat called ArtFest! This is a huge event (600 in attendance from all over the world) and I had made reservations to go way before Richard got sick. I won't write about the details of the time there (Maybe I will write all about it on my other blog) but I must tell you about "the going", my reasoning and my feelings while I was away.
I am learning the importance of taking care of myself as we progress through this journey. To that end I felt like it was almost mandatory that I go to ArtFest. I felt like I needed to immerse myself into something totally different than what has been going on in our lives recently. The decision to go was not an easy one.......and up until we left I still was feeling unsettled.....but at the same time I knew it was important for Rick and I to spend some time apart. The message to Rick was such an important one...."I believe that you are well....and that you can take care of yourself, our home, the animals, etc..... I see you as capable and strong." That message was equally as important for me.
I had a blast at ArtFest. I was surrounded by loving friends the whole time and I met many amazing people. But....whew.....I missed Richard, our home and our family. Dana and Emily were with their Dad (thank you guys....I love you both so much!!!!) and when I spoke to Richard I could tell that he was having a great time.....but oh my gosh....I missed him, them!!!! I loved my time away. ArtFest is known to be life changing and exhausting. I came home very tired but very anxious to put my arms around my husband. The homecoming was heavenly.
I will write more later.....lots to share....but for now the sun is shining.....Jamaica is barking at the door and I want to get this posted.
I love you all! Blessings!
Sherri
Sunday, March 30, 2008
Scary Visit with Dr Congdon
Friday was a little scary, as we reviewed the MRI results with my Oncologist. In the report, as Sherri noted in her last entry, there was an area of "enhancement" noted in this MRI which was not noted on the previous MRI report in January,.. Dr Thompson, remembered that the same area was noted on the post-op MRI last October, so he had an addendum added in which the current area was measured and compaired to the post op.. and it is smaller and less enhanced now than in the Post-Op MRI.. However, Dr Congdon does want monthly MRI's done for at least 3 months to monitor this spot..
Both physicians, Sherri and I all feel feel that it is nothing to worry about.. just some scar tissue from the surgery or .. now enhanced because of ??????.
Live On! Love On! Happy Spring!
P.S. It snowed 3" here in Bellingham Saturday.. March 29th.. !!!
Love to all
Richard
Both physicians, Sherri and I all feel feel that it is nothing to worry about.. just some scar tissue from the surgery or .. now enhanced because of ??????.
Live On! Love On! Happy Spring!
P.S. It snowed 3" here in Bellingham Saturday.. March 29th.. !!!
Love to all
Richard
Thursday, March 27, 2008
MRI Results!!!
Richard and I just got home from seeing the head of the clinical trial manager (Dr. Thompson, Richard's radiologist) and his assistant (Cheryl....who is really the manager :)!!!). We were given the results of yesterday's MRI!!! The MRI looked very good...excellent in fact!!!! The area of enhancement that was noted in the last MRI looked even smaller and there is no new tumor growth. We are breathing a huge sigh of relief and total joy!!!!
We both went into this MRI feeling like everything was going to be stable and fine....but no matter how strong our belief is....I think we both still worry.....I know we both worry. Faith is such a hard thing to maintain...even when your belief is so clear and strong. And....as our journey continues (now almost seven months) the worry is always close.
Yesterday, as they took Richard through the door to the MRI machine, he turned around and looked at me, an eye piercing look, for just a moment. I smiled back trying desperately to send him positive assurance as he again entered that big, noisy tube and went through the procedure. It's amazing...how I still get choked up as he bravely faces each of these hurdles. I have such pride and admiration for him as he continues through this journey. He is my warrior.
Todays blood work showed some concern regarding the lymphocyte levels. This is what they really watch over the course of the chemo. He's having to go back in and do some more bloodwork.....He says, "Oh well....another poke". We see the oncologist in Everett tomorrow so we will have more news about all that then. They really watch all his bloodwork very closely. I am sosososo glad. We have an amazing team. I am so thankful.
Richard reported to the doctor today that he was feeling more tired. He also said that the nausea levels have required two anti-nausea pills on some days. He has loss around ten pounds....his appetite has definately changed. He's only working about 30 hours a week at this point...which is incredible compared to other chemo patients. On the whole he is quite the specimen if you ask me.
So...we march forward....gleaning as much from this experience as possible. We are thankful for so much. I think we are getting better at "living" with our situation and we're both making good choices in honoring our committment to loving one another, being in the present moment, getting rest, exercising, eating well and remembering, at all times, our many blessings.
Thank you for continuing to hold us in your thoughts. Everyone's prayers and beliefs in Richard's total recovery are working miracles here on East Maplewood. We carry your light with us daily.
Love Sherri
We both went into this MRI feeling like everything was going to be stable and fine....but no matter how strong our belief is....I think we both still worry.....I know we both worry. Faith is such a hard thing to maintain...even when your belief is so clear and strong. And....as our journey continues (now almost seven months) the worry is always close.
Yesterday, as they took Richard through the door to the MRI machine, he turned around and looked at me, an eye piercing look, for just a moment. I smiled back trying desperately to send him positive assurance as he again entered that big, noisy tube and went through the procedure. It's amazing...how I still get choked up as he bravely faces each of these hurdles. I have such pride and admiration for him as he continues through this journey. He is my warrior.
Todays blood work showed some concern regarding the lymphocyte levels. This is what they really watch over the course of the chemo. He's having to go back in and do some more bloodwork.....He says, "Oh well....another poke". We see the oncologist in Everett tomorrow so we will have more news about all that then. They really watch all his bloodwork very closely. I am sosososo glad. We have an amazing team. I am so thankful.
Richard reported to the doctor today that he was feeling more tired. He also said that the nausea levels have required two anti-nausea pills on some days. He has loss around ten pounds....his appetite has definately changed. He's only working about 30 hours a week at this point...which is incredible compared to other chemo patients. On the whole he is quite the specimen if you ask me.
So...we march forward....gleaning as much from this experience as possible. We are thankful for so much. I think we are getting better at "living" with our situation and we're both making good choices in honoring our committment to loving one another, being in the present moment, getting rest, exercising, eating well and remembering, at all times, our many blessings.
Thank you for continuing to hold us in your thoughts. Everyone's prayers and beliefs in Richard's total recovery are working miracles here on East Maplewood. We carry your light with us daily.
Love Sherri
Tuesday, March 18, 2008
RV
Sherri and I decided to take a little get away trip in our RV (Thanks DAD). It was the second time that we had used it, the first being last September just a couple weeks before my diagnosis. This did not enter my mind throughout the entire weekend and we, along with Sherri's sister, Jodi and her husband, Richard enjoyed a real RV weekend at Padilla Bay. Padilla bay is across near Anecdotes (and an oil refinery) and jut 30 miles from our home in Bellingham. We are lucky to live in such a beautiful part of the country. We also saw several eagles, one in a tree about 30 feet away, and a family of five soaring high overhead. We had wonderful walks on the beach and to a nearby wildlife preserve. We ate delicious food and are looking forward to many more get aways this summer. Here are some photo's from the trip.
Thursday, March 13, 2008
Love
The days and weeks go flying by. It's so hard to believe that it has been almost six months since Richard's diagnosis. It seems like yesterday when I was sitting in Dr. Goodman's office hearing that my beloved husband had a brain tumor. I think, maybe, just a little bit, I may be coming out of the shock of the news and the events that followed.
It has been such a hard time....so challenging in so many ways........... Yet....it has also been such a blessed time. How can that be? And is it those two extremes that make me often feel like I am not part of this world anymore....as if I can't relate.....as if I don't fit in? My main teacher has not been the brain tumor....or the removal of it....but my Teacher has been Richard and also my own inner heart....the tumor has only given me a reason to listen and pay attention to every detail.
Richard is a natural teacher. He teaches by example....always..... He moves and acts with an awareness of humanity that is absolutely amazing. He truly is always asking....what would love do in this situation...and given that parameter he moves, makes decisions, acts with "light". I am often standing in awe of his depth of compassion and sensitivity....and in the congruency between his beliefs and his actions. To say I love him seems like such an understatement.
I have learned, too, that I am strong and capable. I'm not afraid of loving anymore....not just Richard....but truly moving through my days taking risks, listening, looking people in the eye, letting myself feel their own struggles, triumphs, happiness and fears and trusting that I have an inner wisdom that I can trust and rely on. All my fears are slowly growing smaller....and my ability to be genuine seems to be taking over. It isn't easy.....sometimes I am so overwhelmed and frightened I feel totally frozen....but if I find my heart, my soul, my "being"...I find the way...just for me....no one elses way....but my own. And I have to believe that that is right.
My favorite times, of course, are times when Richard and I are together...feeling easy in our experience.....talking, laughing, telling stories, making plans.....but mainly I love listening to him and being moved by his wisdom, his true loving nature, his committment to creating a reality of love, nuturance and health.
There are always the moments where my breath is totally taken away by the thoughts that someday I may have to experience a life without this man. I become frozen thinking that I may not always have him beside me. The fear is huge, dark and cold.....and so intense. And I don't believe that those moments will ever grow easier or even lessen in their occurence. I'm coming to accept that they are part of this total journey that we are on.
Sometimes these thoughts make me afraid that I'm losing my focus, my strength....but I'm learning that it is because of the depth of my strength and love that I am led to these places and that I will be OK. I'm learning to let myself "feel" it all....the good and the bad. I guess I'm learning to believe that you can't have one without the other. My breath seems to get me through these times....I can't run fast enough to get away from these thoughts....but I've become aware that sitting with them is not all that bad.
I love "tending" to Richard....the little things....getting him water, helping him take off his shoes, bringing the covers up around his neck when he has the chills, pulling his little hat down over his ears so he stays warm. I need to touch him....just simply.....my hand on his cheek, reaching out and touching his arm at night...not to wake him....but just to feel his warmth and his presence, holding hands, sitting in the chair with him as we watch TV, nuzzling his neck with my nose taking in his wonderful smell, rubbing his little bald head, rubbing my foot along his leg. It's these moments that my hands are the most tender....loving, nuturing, speaking...saying I love you. I've never been aware of that language....I am thankful I am learning it now.
We are doing well as we become more familiar with this journey. We are learning how to live with chemotherapy, bloodwork, anticipated MRIs, antibiotics, lots of pills, wierd food cravings, a new quietness in our lives. We continue to be so thankful for all of you.....we feel you thinking of us....you are part of our strength.
My love, Sherri
It has been such a hard time....so challenging in so many ways........... Yet....it has also been such a blessed time. How can that be? And is it those two extremes that make me often feel like I am not part of this world anymore....as if I can't relate.....as if I don't fit in? My main teacher has not been the brain tumor....or the removal of it....but my Teacher has been Richard and also my own inner heart....the tumor has only given me a reason to listen and pay attention to every detail.
Richard is a natural teacher. He teaches by example....always..... He moves and acts with an awareness of humanity that is absolutely amazing. He truly is always asking....what would love do in this situation...and given that parameter he moves, makes decisions, acts with "light". I am often standing in awe of his depth of compassion and sensitivity....and in the congruency between his beliefs and his actions. To say I love him seems like such an understatement.
I have learned, too, that I am strong and capable. I'm not afraid of loving anymore....not just Richard....but truly moving through my days taking risks, listening, looking people in the eye, letting myself feel their own struggles, triumphs, happiness and fears and trusting that I have an inner wisdom that I can trust and rely on. All my fears are slowly growing smaller....and my ability to be genuine seems to be taking over. It isn't easy.....sometimes I am so overwhelmed and frightened I feel totally frozen....but if I find my heart, my soul, my "being"...I find the way...just for me....no one elses way....but my own. And I have to believe that that is right.
My favorite times, of course, are times when Richard and I are together...feeling easy in our experience.....talking, laughing, telling stories, making plans.....but mainly I love listening to him and being moved by his wisdom, his true loving nature, his committment to creating a reality of love, nuturance and health.
There are always the moments where my breath is totally taken away by the thoughts that someday I may have to experience a life without this man. I become frozen thinking that I may not always have him beside me. The fear is huge, dark and cold.....and so intense. And I don't believe that those moments will ever grow easier or even lessen in their occurence. I'm coming to accept that they are part of this total journey that we are on.
Sometimes these thoughts make me afraid that I'm losing my focus, my strength....but I'm learning that it is because of the depth of my strength and love that I am led to these places and that I will be OK. I'm learning to let myself "feel" it all....the good and the bad. I guess I'm learning to believe that you can't have one without the other. My breath seems to get me through these times....I can't run fast enough to get away from these thoughts....but I've become aware that sitting with them is not all that bad.
I love "tending" to Richard....the little things....getting him water, helping him take off his shoes, bringing the covers up around his neck when he has the chills, pulling his little hat down over his ears so he stays warm. I need to touch him....just simply.....my hand on his cheek, reaching out and touching his arm at night...not to wake him....but just to feel his warmth and his presence, holding hands, sitting in the chair with him as we watch TV, nuzzling his neck with my nose taking in his wonderful smell, rubbing his little bald head, rubbing my foot along his leg. It's these moments that my hands are the most tender....loving, nuturing, speaking...saying I love you. I've never been aware of that language....I am thankful I am learning it now.
We are doing well as we become more familiar with this journey. We are learning how to live with chemotherapy, bloodwork, anticipated MRIs, antibiotics, lots of pills, wierd food cravings, a new quietness in our lives. We continue to be so thankful for all of you.....we feel you thinking of us....you are part of our strength.
My love, Sherri
Monday, March 10, 2008
Another day.
A quick update for you.. I thank Sherri for keeping up the blog, her writing is so good. I am now in my 3ed cycle of Temador, 200 mg day for 21 days. I am scheduled for a MRI on the 26th of March, and feel very confident that it will be clean with no evidence of regrowth.. seem that with most GBM patients, they are fine as log a they keep taking the Temador.. I am getting a little carry over nausea during the days sometimes, by my Zofran works excellent for that (as it should for $25.00 a tablet. I nap in the afternoons, and that along with walking if helping the fatigue.. (Sherri and I and our dogs did 4.5 miles on Saturday)
My love to all and keep those positive vibes coming.. they really are working!
Richard
My love to all and keep those positive vibes coming.. they really are working!
Richard
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